Thursday, May 19, 2011
Thursday, March 31, 2011
The Battle For My Son
The following is a letter I am sending to SC DHHS department of appeal and hearings. The letter will explain why. I have been since the beginning of this year fighting for the right to keep Dominick's Medically Necessary, deemed by his doctor, behavioral specialist and other therapists, Speech and Occupational Therapy.
March 31, 2011-03-31
Division of Appeals and Hearings
Department of Health and Human Services
PO Box 8206
Columbia, SC 29202-8206
Re: Dominick Perry Chirico
To Whom It May Concern:
I am writing this letter on behalf of my disabled child Dominick Perry Chirico (DOB 05/21/2007). My son was diagnosed with Autism on 12/17/2009 and Sensory Integration Dysfunction on 08/19/2010 by Dr. Stegman ( Joseph C. Stegman, MD, Developmental & Behavioral Pediatrics of the Carolinas, 301 Medical Park Drive, Suite 202, Concord, NC 28025, Phone: 704-403-2626, Fax: 704-403-2699). My son was enrolled into Baby Net and began receiving TEFRA benefis and was enrolled into the Blue Choice – Healthy Connections / Choices plan. I was told by my son’s Speech and Occupational Therapists (Tega Cay Speaks, 2166 Gold Hill Road, Tega Cay, SC 29708, Phone: 803-802-5508 Fax: 803-802-5528 Email: services@tegacayspeaks.com Andrea Smith, M.C.D., CCC-SLP, Certified Speech-Language Pathologist and Anissa Sain, B.S., COTA, Certified Occupational Therapy Assistant) in January that Dominick’s ST and OT would be reduced and/or cut off. They told us of a conference call we could dial into to hear more information about the new caps on therapy. After the conference call my husband, myself and Dominick’s therapists were left with more questions than answers. After every question was asked it was answered with please submit your question in writing. I took it upon myself to find more information. I began by calling Blue Choice customer care center, 1-866-781-5094, and also the current eligibility line, 1-866-757-8286. I was put on hold over 10 times, I was transferred over 10 times and every time I spoke to someone they seemed to not know anything about the new caps Medicaid and DHHS were implementing on 04/01/2011. Finally I found Christopher Lykes. I was told by him not to talk to anyone else, that he is the only one who is handling this matter. I asked him what was needed and what and who I should provide it to request additional units for my son’s therapies. He told me that my therapists should have received the bulletin. I explained that they had not and I was trying to find the information on my own since no one seemed to know what to do. He was extremely rude and demeaning. I went onto http://www.dhhs.state.sc.us to find any information I could. I finally found the link for the bulletin Mr. Lykes told me about. I found SCDHHS no longer mails paper Medicaid Bulletins. Medicaid Bulletins are only being distributed electronically through e-mail and available on this site. To receive Medicaid Bulletins via e-mail, you must Subscribe to the Provider listserv. I personally subscribed to the list and printed out the January 31, 2011 bulletin. I called my therapists office informed them of the bulletin and that they were no longer receiving paper/in the mail bulletins. No one had informed them they needed to sign up for the bulletins on the website and that they would no longer be receiving them in the mail! They did not receive the December 14, 2010 also. How are any of us, providers and parents, to know how to proceed further without the knowledge of change?
My son is currently receiving 2 sessions of speech therapy at 30 minutes per session and two sessions of occupational per week for a total of 1 ½ hours. I am appealing the cuts in Dominick’s services and requesting a fair hearing, which is mandated by 42 U.S.C. § 1396a(a)(3). I am appealing for several reasons first and foremost I was not sent any notification through DHHS that Dominick’s services would be cut and yet to date have not received any letter from DHHS. I was also not sent any notification from DHHS that in order to request more services and not be completely cut off I need my Physician to write a letter of medical necessity. I luckily found out through my therapists and the luckily found out through other therapists. This is unacceptable behavior on the part of DHHS. According to the fair hearing rights under Medicaid when the Department takes an action that affects your eligibility or services, it must be sent to you in a notice and the notice must also contain: A statement of what action the State intends to take; The reasons for the intended action; The specific law that is applicable to the action; An explanation of your right to request a hearing, or In the case of an action based on a change in law, the circumstances under which a hearing will be granted; and An explanation of the circumstances under which Medicaid is continued if a hearing is requested. In most situations, the Department must mail this notice to you at least 10 days before the date of action. In other words, there are 10 calendar days between the date that the notice is put in the mail and the date that the action takes place.
Remember: The notice must go to you. A notice to your service provider is not sufficient. (http://www.drcnh.org/medicaidhearings.htm) (Disabilities Rights Services)
I have yet to date received any notice from DHHS. I have yet to be approved or denied. I am uncertain of when or who will be sending the approval and to whom they will send it to (My son’s pediatrician, behavioral therapist or speech and occupational therapists). Thanks to a parent who started a Face Book page , SC Medicaid Crisis – Help Our Children, I was informed of the following: INFO ON EPSDT APPEALS AND APRIL 1 DEADLINE
by The Arc of South Carolina on Tuesday, March 29, 2011 at 8:03pm From SC Voices - YOU MUST HAVE PPWK Sent in by April 1 in order for Medicaid to continue covering services if you have already met the 75 / year. You can appeal even if you have not submitted or received a decision on your prior authorization request. Even though Medicaid will continue covering services if you submit your appeal prior to April 1, you are at risk of having to repay any services received between April 1 and the date of the hearing officer’s decision if you lose your appeal. This risk is greater for those who have higher incomes or assets. HHS can take legal action to go after your assets, but it is a costly process for them to try to collect. There is a database that can be checked by therapists to let families know how many units have already been used prior to April 1 (FRIDAY). A therapist may refuse to provide services after that date if Medicaid coverage is not available. If you do not turn in your paperwork by April 1 and still continue to receive services through the extra hours granted by the prior authorization decision, you can still appeal the prior authorization decision at a later date, but if you run out of services during this process, you may not be able to restart services until that appeals process has been completed.
Also this:
Important information about therapy reductions from Protection and Advocacy
by The Arc of South Carolina on Saturday, March 26, 2011 at 7:03pm March 24, 2011 To parents of children affected by the Medicaid therapy reductions: Protection and Advocacy for People with Disabilities (P&A) received information at the Medicaid group hearing on March 21, 2011 at the SC Department of Health and Human Services (DHHS) that we want to share with you. DHHS’s current position seems to be that only individuals who request a fair hearing prior to April 1 (the date that the therapy reductions take effect) are entitled to receive services during the appeal process. SCDHHS has not decided if it will allow individuals who file an appeal after that date to continue receiving services until a decision is made. For those of you who want to file an appeal to protect your child’s services, we have enclosed a sample request for a fair hearing that you may use. This information is not intended to be legal advice, as each child’s situation is different. If possible, we recommend that you consult any attorney before proceeding with an appeal. P&A may be able to take individual cases and represent you at your fair hearing, depending on our resources. If you lose this appeal, it is possible that DHHS will try to recover payment for services provided between April 1 and the date of the hearing officer’s decision. This is less likely for individuals who qualify for Medicaid based on income. We know that some of you may not have received your decisions from your prior authorization request yet, but if you want your child’s services to continue uninterrupted, you may need to file a request for an appeal prior to that time. For those individuals who have not yet received a decision, one of the topics that you may need to address at the hearing is whether DHHS has the authority to implement a 75 hour cap on children’s therapy services. This matter is a legal-based argument and the hearing officer may not be willing to listen to the individual facts of your case. P & A may be able to provide you with materials prior to your hearing to assist you in your preparation. There may be other issues relevant to your case, such as a defective or inadequate notice, that you may wish to address. Your child’s hearing may be scheduled in a group hearing setting where other individuals will also be presenting their case. For those who have already received your prior authorization decision, your appeal can discuss the subjects of whether DHHS has the authority to implement a 75 hour cap on children’s therapy services AND whether the hours that the physician requested for your child are medically necessary. We believe you should state both of these arguments during the hearing, as well as any others that you feel are relevant, such as ineffective notice or an inefficient prior authorization process. It is best to note all of the concerns in your letter requesting a fair hearing so that the arguments are in writing. DHHS may object to arguments about the legality of the 75 hour cap because you did not appeal within 30 days of the newsletter. You will need to let the hearing officer know if you or your provider were told by DHHS at any time to wait until you have completed the prior authorization process before appealing. If DHHS objects to the any of your arguments and the hearing officer rules that they cannot be addressed, you should ask that all of this be noted in the record. If you are allowed to argue these points, P & A may be able to provide you with materials prior to your hearing that you can submit to in order to address these topics. When presenting the medical necessity part of your case, be prepared to justify the hours that your doctor recommended. It would be very helpful to have your doctor and/or therapist testify on your behalf to explain their recommendations.-
I was told by the Director of Appeals, Robert French, that I could not file an appeal for a fair hearing without a decision of denial for the additional units. He was unaware of what I should do and who I should contact for details. I informed him of Christopher Lykes and gave him his phone number. He said he would look into the matter.
I found the following articles:http://carolinafinds.com/blog/sc-cuts-disabilitieshivaids-funds-approves-possible-loan-for-heritage-golf-tourney/
SC Cuts Disabilities/HIV/AIDS Funds, Approves Possible Loan for Heritage Golf Tourney
18 March 2010, 4:48 pm In the same budget that would eliminate all Department of Disabilities and Special Needs programs except for people who live in institutional settings, and earlier this month voting to cut all HIV/AIDS funding from the state budget – becoming the first state to propose elimination the entire said budget, the South Carolina House of Representatives voted 69-43 to make available a 10 million dollar loan for the PGA Heritage Golf Tournament in case they have not captured another sponsor for next year’s event. The tournament is held on Hilton Head Island each year, the week after the Masters in Augusta, and is currently sponsored by Verizon, a sponsorship that ends this year. The loan was approved after cuts to other areas of the state budget and according to Nikki Haley, “In a budget year like this, they raided the insurance trust fund — a fund that’s meant to protect consumers after hurricanes and natural disasters — to lend money to a golf tournament. That is so far removed from what our taxpayers want,” washingtonexaminer.com/economy/ap/after-making-other-cuts-sc-lawmakers-vote-to-keep-10m-loan-to-pga-tournament-in-state-budget-88247757.html#ixzz0iXZYu0p7 -
How does this make sense?
http://www.facebook.com/note.php?note_id=355608302915 Budget Cuts - IMPORTANT INFORMATION PLEASE READ
by Richland/Lexington Disabilities and Special Needs Board on Thursday, March 11, 2010 at 2:11pm Date: March 10, 2010
To: Consumers, Family Members, and Other Concerned Citizens
From: Mary S, Leitner, Executive Director
Richland/Lexington Disabilities and Special Needs Board
As you know, the House Ways and Means Committee adopted a budget plan for Fiscal Year 2010-2011 that included a $47 million state funding cut to the South Carolina Department of Disabilities and Special Needs (DDSN). The Ways and Means Committee members recognize that an error was made in the Committee’s computations, and we have been assured that a way has been found to prevent DDSN from experiencing the entire 28% reduction in state funding. Chairman Cooper made a statement indicating “…I plan on offering an amendment when the budget is debated on the House floor that will redirect $22.3 million of state funds to DDSN that can be used as their state match.” We are very grateful for this support.
There is still a shortfall of $24.7 million in state dollars. We need this funding.
Remember, DDSN uses these state funds to match Medicaid – so, many more millions of dollars will be lost. This loss of revenue could impact YOUR services. Those of you who receive benefits through one of our state’s Medicaid Waivers might find that the Mental Retardation/Related Disabilities Waiver (MR/RD Waiver), the Head and Spinal Cord Injury Waiver (HASCI Waiver), Community Supports Waiver (CSW) and the Pervasive Developmental Disability Waiver (PDD Waiver) and all that they fund would be significantly reduced or come to an end. Your Service Coordinator’s caseloads will continue to rise. Early Intervention services could continue to be eliminated. State funded respite and family support will be eliminated. Day services would be available only to those consumers receiving residential services. We must work together to prevent such a disaster for many of the people we serve and their families.
As the services we provide decrease, the waiting lists will increase. Those of you who have infants and children in school need to advocate so the services will be available when you need them.
These budget cuts will impact the State of South Carolina. We need to prevent a rise in unemployment because family members are forced to leave their jobs because they must stay home to provide care that is no longer funded. Remember, Medicaid revenue generates jobs such as personal care aides, respite caregivers, day programs staff, service coordinators, early interventionists. This funding also pays for goods provided by companies that will lose business (diapers, wipes, nutritional supplements, etc.). This funding allows DDSN to provide services that enable many family members to work.
I would like to thank those of you who have already contacted your legislators. Many of them have a better understanding of the critical situations being faced by our state’s most vulnerable citizens. But – we need to continue our advocacy effort.-
http://www.scjustice.org/Brochures/Focus%20on%20Kids/Focus%20on%20Kids%20full%20budget%20no%20embargo%20no%20add.pdf
Behind the Numbers
An Overview of State Budget Cuts And Their Impact on South Carolina’s Children
Presented by Focus On Kids A Project of South Carolina Appleseed Legal Justice Center
March 2011
DEPARTMENT OF DISABILITIES AND SPECIAL NEEDS
AGENCY OVERVIEW
South Carolina’s Department of Disabilities and Special Needs has authority over the state’s services and programs for the treatment and training of people with mental retardation, autism, head or spinal cord injuries and conditions related to each of these four disabilities. DDSN currently serves more than 30,500 clients, including about 11,500 children. About 84% of these individuals live at home, mostly with their families, where they generally prefer to receive services. Home services range from stipends, which allow a parent to stay home during the day and care for a child, to caretakers and therapists coming into the home, allowing a parent to go to work or the grocery store. These latter services are generally referred to as respite services. Funds available for respite services are very limited, and demand appears doomed to always outpace supply in South Carolina. Every cut is felt dramatically. The remaining individuals served by DDSN have needs that cannot be met at home and require services provided in community-residential settings or in one of DDSN’s five regional centers. About 4,000 people receive 24-hour residential care in community settings, and another 800 people, those with the most severe disabilities, live in the regional centers, which offer specialized training, supervision and 24-hour-a-day health care.
A CLOSER LOOK AT THE NUMBERS • For FY10-11, the General Assembly appropriated $128.9 million in state funds for DDSN – a 46% reduction since FY08-09.
• DDSN suffered its deepest cuts yet to recurring state funds in FY10-11. That portion of its budget decreased by almost 15% from the previous year.
• For FY10-11, $172.2 million in state funds drew down $348.5 million in matching Medicaid funds. We will not know how many Medicaid dollars South Carolina missed out on as a result of state-budget cuts until the end of FY10-11. In FY09-10, South Carolina lost $31 million due to funding cuts.
• DDSN operates five regional centers, serving about 775 South Carolinians with the most severe disabilities. The regional centers provide specialized training, supervision and around-the-clock care. In FY10-11, the centers had $295,000 cut from their operating budgets.
• In FY09-10, major program budgets were slashed, including $10 million in state funds from the Mental Retardation Community Residential Program and $7 million from the Mental Retardation In-Home Family Support Program. State funding for DDSN’s regional centers was halved that year as well.
THE REALITY BEHIND THE NUMBERS INCREASED DEMAND MAY GO UNMET
Cases are piling up at DDSN. Progress in science and medicine saves lives, but it also means more children and adults require services to meet their special needs. DDSN now receives at least 500 new requests for eligibility determination per month. Meanwhile, turnover in DDSN’s service system is very limited as severe disabilities are lifelong. Adding stress to the lives of many DDSN clients is the fact that many services have been paid for with nonrecurring funding for the past several years. Will the money be there next year? The disabilities will be. Without permanent recurring funding, these South Carolinians are vulnerable year after year. Of FY10-11’s $40.4 million in one-time state funds, which are used to address recurring needs, a DDSN official wrote, “If that funding is not restored in some fashion, it would be disastrous for individuals receiving or needing services.”
In addition, because of our state’s budget crisis, the number of individuals on DDSN’s waiting lists continues to grow, as do the waiting periods. Additional funding is needed to relieve the 2,147 individuals awaiting DDSN’s Medicaid-funded mental retardation, autism and head and spinal cord services.
DIMINISHED SERVICES
• Child Development Centers were reduced from five to two in January 2009. Ninety children lost access to those service offerings at the time. Since 2009, DDSN has funded the two remaining centers with non-recurring funds, as required by proviso.
• DDSN lost 70 beds in FY10-11, extending waiting lists by that number.
• Having lost $2.6 million for family-support stipends and respite since October 2008, those services were further reduced in FY10-11. DDSN did not respond to a request for specific numbers.
• In June 2007, 6,864 families received day services from DDSN. In June 2010, 7,077 did. This low growth is worrisome given the slow turnover rate among DDSN clients, who typically require assistance for life.
• Summer Services accommodate just over 3,000 children with disabilities who attend public schools and/or whose parents are working or need respite but have no extended family or other caregivers available during summer work hours. Summer Services include camps, daycare, therapy and other support tailored to the individual. In many cases, this program enables families to keep their disabled children out of residential placement. The number of children In Summer Services has grown by only 610 students in five years. DDSN did not provide specific enrollment numbers, stating only that, “There are some people turned away due to limited funding and capacity even in good years. Summer services had been funded about $700,000 each year until 2009, when it was reduced to about $300,000. In 2010 these services were funded using respite/family support funds.”
• In April 2010, DDSN eliminated 50 positions. In addition to direct care providers, positions lost include data coordinator, human-service coordinator, supply specialist and program coordinator. DDSN declined to comment on how personnel losses impact services.
COURT RULES AGAINST CUTS In November 2010, a federal judge ruled against Gov. Mark Sanford, DHHS and DDSN – ordering the state to reverse budget cuts that could have forced the institutionalization of three Upstate residents with special needs in violation of the Americans With Disabilities Act. At the center of the trial was the issue of in-home care for people with special needs. To save money, the state attempted to eliminate the services that enabled the three plaintiffs to live at home and pursue some normal activities, such as work. The judge held that the plaintiffs’ lives would be drastically upended as a result of the budget cuts, and federal law prohibits compelling people with special needs into restrictive environments when less disruptive ones are available. The ruling puts the state on notice that courts are serious about enforcing the federal law. Continued cuts to in-home services will open the state to further costly litigation that would divert funds from services. Furthermore, at-home care is usually less expensive than institutionalization. PROVIDERS GO UNCOMPENSATED As service-provider costs have risen, DDSN has reduced its reimbursement rates four times in the past five years. The General Assembly made these cuts permanent in 2011. Access to quality care demands fair compensation. If the state cannot afford to fully reimburse its service providers, it will not be long before they tire of being underpaid and turn DDSN clients away. DDSN’s budget request for FY11-12 includes an appeal for $2.2 million in new state funds in order to compensate service providers for the actual cost of care. -
TOO ADD INSULT! The budget cuts from March 2010 cost SC from receiving a large amount of stimulus money. If the budget cuts could have been resolved we would have received the stimulus money and would not have had to bail out Medicaid this year out of our SURPLUS fund. Amazing how SC has a surplus of funds exceeding the amount they had to cut from Special Needs programs.
http://www.foxcharlotte.com/news/local/NC-Officials-Say-Agreement-Brings railroad-Grant-118467509.html NC Officials Say Agreement Brings Railroad Grant Story Created: Mar 22, 2011 at 6:47 PM EDT Story Updated: Mar 22, 2011 at 6:47 PM EDT RALEIGH, N.C. - Transportation officials said Tuesday they've reached an agreement that will allow them to obtain $461 million in federal grants to improve passenger train service between North Carolina's two largest cities. The pact will allow faster and more frequent passenger service between Charlotte and Raleigh. North Carolina had to obtain an agreement with Norfolk Southern (NSC - news - people) Railway and Amtrak to qualify for the grants. The Federal Railroad Administration had been concerned that slower freight trains might hamper the new service. U.S. Transportation Secretary Ray LaHood said the grants are part of President Obama's vision for a national high-speed rail system that "will link 80 percent of Americans in the next 25 years, and lay the foundation for an economy that moves people, good and information quickly, safely and reliably than anywhere else in the world." "Today, we have made significant progress towards that goal," he said in a statement. Currently, part of the route between Charlotte and Raleigh is shared with Norfolk Southern freight trains. For passengers, that sometimes means long delays when Amtrak passenger trains must stop and allow a freight train to pass.-
Priorities from the government to its citizens are not the same
The federal government has $461 million for a train system that no one wants, will save 13 travel time and Wisconsin and Ohio both turned down! I am so glad the federal government is worried about travel times when children are being denied LIFE SAVING MEDICALLY NECESSARY SERVICES! But hey the kids could take a fast train from charlotte to Raleigh and save a little time. I am sure that will make up for the loss in therapy.
Because of all of this I am unclear as why my child’s Medically Necessary Therapy’s MIGHT been cut in half so I am unclear how to argue my case but I have listed several reasons below.
I would like to point out the federal Medicaid program mandates Early Periodic Screening Diagnosis and Treatment (EPSDT) for children fewer than 21. EPSDT mandates screening and treatment necessary “to correct or ameliorate a physical or mental condition” and all states must provide this treatment promptly and for as long as needed. EPSDT services are mandated by 42 U.S.C. § 1396a (a)(10). There is case law that defines what EPSDT meant when they stated “to correct or ameliorate a physical or mental condition.”
In Collins v. Hamilton, Indiana district court Judge Young, now Chief Judge Young held that defendants’ standing policy of refusing to provide necessary long-term residential treatment to mentally ill children violated federal Medicaid law. 231 F. Supp. 2d 840 (S.D. Ind. 2002), aff’d 349 F.3d 371 (7th Cir. 2003). Collins involved a class action challenge to a policy enforced by the former heads of the FSSA. The Collins defendants argued that “the psychiatric services to which an EPSDT child is entitled involve only ‘active’ treatment” and that the phrase “to correct or ameliorate” did not anticipate long-term residential care. The Collins district court referenced a well-known dictionary that defined the term “ameliorate” as “to make better or more tolerable.” Noting that “[t]here is no time limitation evident in this definition,” the district court held that “[r]equired treatment includes anything which is to make a condition, even a long-term condition like mental illness, more tolerable.” For that reason, the district court found that the defendants’ standing policy of refusing to provide long-term residential treatment for patients for whom such treatment had been found necessary by an EPSDT screening violated the federal Medicaid Act, entitling the class members to summary judgment and a permanent injunction. The Seventh Circuit Court of Appeals affirmed Judge Young’s decision, specifically noting that “[w]e see no reason why residential treatment, even if long-term, cannot consist of ‘active treatment’ that ‘improves or ameliorates’ a patient’s condition.” 349 F.3d at 375-76. Because Indiana was required to fund the cost of placement in the long-term treatment facility at issue, the Seventh Circuit affirmed the district court’s decision to grant summary judgment and issue a permanent injunction.
In Ekloff v. Rodgers - Incontinence Briefs for Disabled Children Deemed MedicallyNecessary to Prevent Skin Breakdown, the United States District Court for the District of Arizona had to determine whether incontinence briefs prescribed as medically necessary to prevent skin breakdown for disabled children were covered by Arizona’s Medicaid program. 443 F. Supp. 2d 1173 (D. Ariz. 2006). At issue in that class action was whether preventative treatment is required under the phrase “to correct or ameliorate.” Recognizing that Collins is “the only case nationwide that even makes an attempt to define ‘correct or ameliorate’ for purposes of Medicaid,” Ekloff applied the Collins definition and held that [c]learly, the incontinence briefs are meant to make the children’s condition better or more tolerable by preventing skin breakdown. The briefs are used to not only prevent future pain from open skin sores but to facilitate and maximize their daily opportunities as well as to make their condition as tolerable as possible by not forcing them to suffer the needless pain of skin sores. This seems to be the very essence of what Congress had intended in their Medicaid statute. Ekloff reviewed the legislative history of EPSDT and concluded that it there “is a very strong inference to be inclusive rather than exclusive.” (citing H.R. 3299, 101st Cong. § 4213(1989) (EPSDT was crafted to “be the nation’s largest preventative health program from children.”)). Ultimately, Ekloff rejected the defendants’ argument that the phrase “to correct or ameliorate” means that the state only needs to cover services that correct or improve conditions that actually exist. Under that logic, Ekloff noted that the state would “exclude such remedies as antipsychotic drugs until someone has already had a bout of insanity rather than prevent it in the first place.” Id. at 1181. Ekloff rejected the state’s narrow interpretation and concluded that it was “impossible to integrate within the wider framework of Medicaid law.” For these reasons, Ekloff held that the prescribed incontinence briefs were encompassed by the phrase “to correct or ameliorate” and that the state was obligated to provide them under federal Medicaid law. I request that you follow the definition of “ameliorate” used by the district courts in Collins and Ekloff—“to make better or more tolerable.” In affirming the Collins district court, the Seventh Circuit did not take issue with the district court’s definition or application of the term, even commenting that “[w]e see no reason why residential treatment, even if long-term, cannot consist of ‘active treatment’ that ‘improves or ameliorates’ a patient’s condition.”7 349 F.3d at 375-76. Moreover, a comprehensive definition of the term complies with Congress’ intent to be inclusive rather than exclusive with EPSDT. 443 F. Supp. 2d at 1180; H.R. 3299, 101st Cong. § 4213
(1989).
Most recently noted and more on the lines of my appeal in the United States District Court Southern District of Indiana Indianapolis Division A.M.T VS. Michael A. Gargano, (in his official capacity as Secretary of the Indiana Family and Social Services Administration) In late 2009 or early 2010, each of the Plaintiffs, through their respective medical providers, sought authorization for their therapies to continue at the previous rates prescribed by their treating physicians for an additional six months. At least two of the named Plaintiffs had their requested treatments denied or modified. At issue here is whether prescribed therapies that would prevent regression are covered under the Medicaid program. Defendants argue that therapies to maintain a level of functionality where further progress can no longer be expected or progress is minimal in relation to the time needed to achieve that minimal progress is not covered because it is “solely for the purposes of sustaining an individual at a particular level, rather than increasing or improving their abilities.” Defendants contend that they should be allowed to deny the prescribed therapies and wait for the children to be able to “show that they’ve regressed and need additional therapy due to the ability to progress” before covering the treatment. The Court finds that Defendants’ practice and policy of denying or limiting prescribed therapies as maintenance therapy without considering a disabled child’s potential for regression violates federal Medicaid law. As Defendants admit, the plain meaning of a federal statute controls if it is clear. [Dkt. 93 at 13 (citing MBH Commodity Advisors, Inc. v. Commodity Futures Trading Comm’n, 250 F.3d 1052, 1060 (7th Cir. 2001).] The Court finds that the plain meaning of the term “ameliorate” encompasses therapies that prevent regression. Although a child with a chronic condition may reach a level where further progress can no longer be expected or where progress is minimal in relation to the time needed to achieve that minimal progress, therapies that prevent regression still ameliorate the condition by making it more tolerable. Specifically, therapies that prevent regression facilitate and maximize daily opportunities and prevent a child from suffering the needless degeneration of functionality. This was Congress’ intent with EPSDT. See Ekloff, 443 F. Supp. 2d at 1180; Collins, 349 F.3d at 375-76. Additionally, there is no time limitation on the requirement that services be provided to ameliorate a defect or condition. 42 U.S.C. § 1396d(r)(5). Because therapies that prevent regression ameliorate a disabled child’s condition, they are covered under federal Medicaid law. 42 U.S.C. § 1396a(a)(10); 42 U.S.C. § 1396d(a)(4)(B); 42 U.S.C. § 1396d(r)(5).
Attached is a copy of Dominick’s letter from her Primary Care Physician. She clearly states that these services are medically necessary to treat Dominick’s Autism and Sensory Integration Dysfunction. This being said Medical Necessity defined under Medicaid law already encompasses Therapy as an approved Medical Necessity treatment so for DHHS to argue Medical Necessity would be mute due to the fact they are willing to cover therapy treatment now and in the past. However because of EPSDT guidelines DHHS does not have the authority to limit therapy’s for children like Dominick. When first diagnosed my greatest fear was that my son would never look me in the eye and say Mommy or I love you. Due to his MEDICALLY NESSISARY speech and occupational therapies my son has looked me in the eye and said Mommy I love you. My son still has many obstacles to overcome. He does not process pain. Last May he was bitten 24 times on his legs by fire ants. Never once did he flinch, cry, scream or react. I am constantly wondering if he is hurt. He has no way of communicating to me if he is and he might possibly not even know if he is. He is also classified as a “Wanderer”. He has no fear and does not understand dangerous situations. He is unaware of his surroundings and where he is. He takes of running all the time. We have had two close calls with him running into the road and traffic. With Early Intervention we have made so much progress. The therapy my son receives is working. Because Dominick’s condition is not a black and white condition but a spectrum there is no way for another pediatrician or healthcare professional that has never seen Dominick to know how much therapy he needs or how he is benefiting from these therapies. I argue that a third party should be able to deduce weather the primary physician is over prescribing however that third party has to be held accountable not only by the MD he has after his name but the time he has invested into the patient. Does any doctor have the right to decide a medical necessity without examining the patient? That would be a huge ethics issue and would not be permitted in any state. Thanks to Dr. Downing, Dr. Stegman and the therapists at Tega Cay Speaks Dominick is progressing rapidly under his Therapy regime and if you are to reduce these according to Dr. Downing, Dr. Stegman and the therapists at Tega Cay Speaks you will see regression. Once again I want to emphasize these therapies are MEDICALLY NECCESARY per Dr. Downing’s letter to DHHS and is my son’s, Dominick’s, right under the EPSDT guidelines and case law stated within.
I would also like to note that Governor Halley went on record in Charleston at her town hall meeting saying, “Get a letter from your doctor saying we need to continue them on these therapies and that will happen. I’ve confirmed it. I have checked it. If you have any problems you let me know. ” WELL I AM LETTING YOU KNOW. She also went on to say that, “I think the bulletin came out and gave you very little time we are not going to let that happen anymore. You deserve to have more time these are your family members.” (http://www.youtube.com/watch?v=YenbkJ46_yU) (Minute 39:15)
So I want to stress the fact that if the Governor not only said that we were not given the proper notice and also that our therapies would not be cut with a doctor’s letter requesting our therapies to remain the same then how does DHHS have the authority to do this? I would like to request that the governor be informed of this injustice and request her to be present at the hearing.
I would also request that all departments of DHHS be informed and have knowledge of the procedures in place. The lack of knowledge in the different departments about the cut of hours from therapies and not knowing who has the answers has been extremely difficult on the doctors, therapists, parents and most importantly the children. This has taken valuable time away from my child. I have spent countless hours researching, writing, reading, calling, making phone calls and going to extra appointments that I could have used in helping and working with my child myself. He depends and as a part of his Autism DEMANDS he lives to a schedule. Any interruptions in his schedule can set him back. He has started to regress in his therapy sessions by not being as cooperative in the tasks and in the work we do with him at home. I was informed that if I did not have my appeal in by April 1st, 2011 we would not be able to appeal and according to the appeals process this is a gross injustice of our rights. I also request that DHHS mail me a copy of Dominick Chirico’s case file and copies of any other documents that DHHS will use at the hearing. I would also like a copy from DHHS of the letter that reduced my son's therapies since I have yet to receive anything from them.
In closing: I believe that the DHHS was counting on parents lack of information about the procedure to handle this matter, the difficulty of finding correct information, the lack of sufficient time given to receive an approval and DHHS counting on parents getting frustrated, giving up and walking away. I would like request Dominick Perry Chirico’s Therapy schedule as prescribed by Dominick’s primary physician to continue as deemed medically necessary by Dr. Downing. 1 hour a week for Speech Therapy and 1 ½ hours a week for Occupational Therapy while my case is in the appeals process. And I once again ask you to refer to the case history and allow Dominick to continue his therapy per request of his physician Dr. Downing so as to “correct or ameliate (to make tolerable) a physical or mental condition.” I am truly grateful for all the help he has already received from the state of South Carolina and DHHS. I believe with all my heart that my son will be able to Main Stream later. I want him to be able to depend upon himself as he grows older. I do not want him as an adult to depend on any services. With Early Intervention this is possible. By denying him the critical therapy he needs you are only condemning him to a life of burden on a system that is already stretching to its extremes. The rate of Autism Spectrum Disorders is growing every year at an alarming rate. Just days after my son was diagnosed the CDC finally announced it as “A Public Health Crisis”.
Please help our children.
Sincerely,
Deva Potter Chirico Mother and advocate to Dominick Perry Chirico age 3 living with Autism Spectrum Disorder, ASD and Sensory Integration Dysfunction
Cc: Jerri Davison, Attorney Protection and Advocacy for People with Disabilities, Inc. 545 N. Pleasantburg Drive, Suite 106 Greenville, SC 29607
March 31, 2011-03-31
Division of Appeals and Hearings
Department of Health and Human Services
PO Box 8206
Columbia, SC 29202-8206
Re: Dominick Perry Chirico
To Whom It May Concern:
I am writing this letter on behalf of my disabled child Dominick Perry Chirico (DOB 05/21/2007). My son was diagnosed with Autism on 12/17/2009 and Sensory Integration Dysfunction on 08/19/2010 by Dr. Stegman ( Joseph C. Stegman, MD, Developmental & Behavioral Pediatrics of the Carolinas, 301 Medical Park Drive, Suite 202, Concord, NC 28025, Phone: 704-403-2626, Fax: 704-403-2699). My son was enrolled into Baby Net and began receiving TEFRA benefis and was enrolled into the Blue Choice – Healthy Connections / Choices plan. I was told by my son’s Speech and Occupational Therapists (Tega Cay Speaks, 2166 Gold Hill Road, Tega Cay, SC 29708, Phone: 803-802-5508 Fax: 803-802-5528 Email: services@tegacayspeaks.com Andrea Smith, M.C.D., CCC-SLP, Certified Speech-Language Pathologist and Anissa Sain, B.S., COTA, Certified Occupational Therapy Assistant) in January that Dominick’s ST and OT would be reduced and/or cut off. They told us of a conference call we could dial into to hear more information about the new caps on therapy. After the conference call my husband, myself and Dominick’s therapists were left with more questions than answers. After every question was asked it was answered with please submit your question in writing. I took it upon myself to find more information. I began by calling Blue Choice customer care center, 1-866-781-5094, and also the current eligibility line, 1-866-757-8286. I was put on hold over 10 times, I was transferred over 10 times and every time I spoke to someone they seemed to not know anything about the new caps Medicaid and DHHS were implementing on 04/01/2011. Finally I found Christopher Lykes. I was told by him not to talk to anyone else, that he is the only one who is handling this matter. I asked him what was needed and what and who I should provide it to request additional units for my son’s therapies. He told me that my therapists should have received the bulletin. I explained that they had not and I was trying to find the information on my own since no one seemed to know what to do. He was extremely rude and demeaning. I went onto http://www.dhhs.state.sc.us to find any information I could. I finally found the link for the bulletin Mr. Lykes told me about. I found SCDHHS no longer mails paper Medicaid Bulletins. Medicaid Bulletins are only being distributed electronically through e-mail and available on this site. To receive Medicaid Bulletins via e-mail, you must Subscribe to the Provider listserv. I personally subscribed to the list and printed out the January 31, 2011 bulletin. I called my therapists office informed them of the bulletin and that they were no longer receiving paper/in the mail bulletins. No one had informed them they needed to sign up for the bulletins on the website and that they would no longer be receiving them in the mail! They did not receive the December 14, 2010 also. How are any of us, providers and parents, to know how to proceed further without the knowledge of change?
My son is currently receiving 2 sessions of speech therapy at 30 minutes per session and two sessions of occupational per week for a total of 1 ½ hours. I am appealing the cuts in Dominick’s services and requesting a fair hearing, which is mandated by 42 U.S.C. § 1396a(a)(3). I am appealing for several reasons first and foremost I was not sent any notification through DHHS that Dominick’s services would be cut and yet to date have not received any letter from DHHS. I was also not sent any notification from DHHS that in order to request more services and not be completely cut off I need my Physician to write a letter of medical necessity. I luckily found out through my therapists and the luckily found out through other therapists. This is unacceptable behavior on the part of DHHS. According to the fair hearing rights under Medicaid when the Department takes an action that affects your eligibility or services, it must be sent to you in a notice and the notice must also contain: A statement of what action the State intends to take; The reasons for the intended action; The specific law that is applicable to the action; An explanation of your right to request a hearing, or In the case of an action based on a change in law, the circumstances under which a hearing will be granted; and An explanation of the circumstances under which Medicaid is continued if a hearing is requested. In most situations, the Department must mail this notice to you at least 10 days before the date of action. In other words, there are 10 calendar days between the date that the notice is put in the mail and the date that the action takes place.
Remember: The notice must go to you. A notice to your service provider is not sufficient. (http://www.drcnh.org/medicaidhearings.htm) (Disabilities Rights Services)
I have yet to date received any notice from DHHS. I have yet to be approved or denied. I am uncertain of when or who will be sending the approval and to whom they will send it to (My son’s pediatrician, behavioral therapist or speech and occupational therapists). Thanks to a parent who started a Face Book page , SC Medicaid Crisis – Help Our Children, I was informed of the following: INFO ON EPSDT APPEALS AND APRIL 1 DEADLINE
by The Arc of South Carolina on Tuesday, March 29, 2011 at 8:03pm From SC Voices - YOU MUST HAVE PPWK Sent in by April 1 in order for Medicaid to continue covering services if you have already met the 75 / year. You can appeal even if you have not submitted or received a decision on your prior authorization request. Even though Medicaid will continue covering services if you submit your appeal prior to April 1, you are at risk of having to repay any services received between April 1 and the date of the hearing officer’s decision if you lose your appeal. This risk is greater for those who have higher incomes or assets. HHS can take legal action to go after your assets, but it is a costly process for them to try to collect. There is a database that can be checked by therapists to let families know how many units have already been used prior to April 1 (FRIDAY). A therapist may refuse to provide services after that date if Medicaid coverage is not available. If you do not turn in your paperwork by April 1 and still continue to receive services through the extra hours granted by the prior authorization decision, you can still appeal the prior authorization decision at a later date, but if you run out of services during this process, you may not be able to restart services until that appeals process has been completed.
Also this:
Important information about therapy reductions from Protection and Advocacy
by The Arc of South Carolina on Saturday, March 26, 2011 at 7:03pm March 24, 2011 To parents of children affected by the Medicaid therapy reductions: Protection and Advocacy for People with Disabilities (P&A) received information at the Medicaid group hearing on March 21, 2011 at the SC Department of Health and Human Services (DHHS) that we want to share with you. DHHS’s current position seems to be that only individuals who request a fair hearing prior to April 1 (the date that the therapy reductions take effect) are entitled to receive services during the appeal process. SCDHHS has not decided if it will allow individuals who file an appeal after that date to continue receiving services until a decision is made. For those of you who want to file an appeal to protect your child’s services, we have enclosed a sample request for a fair hearing that you may use. This information is not intended to be legal advice, as each child’s situation is different. If possible, we recommend that you consult any attorney before proceeding with an appeal. P&A may be able to take individual cases and represent you at your fair hearing, depending on our resources. If you lose this appeal, it is possible that DHHS will try to recover payment for services provided between April 1 and the date of the hearing officer’s decision. This is less likely for individuals who qualify for Medicaid based on income. We know that some of you may not have received your decisions from your prior authorization request yet, but if you want your child’s services to continue uninterrupted, you may need to file a request for an appeal prior to that time. For those individuals who have not yet received a decision, one of the topics that you may need to address at the hearing is whether DHHS has the authority to implement a 75 hour cap on children’s therapy services. This matter is a legal-based argument and the hearing officer may not be willing to listen to the individual facts of your case. P & A may be able to provide you with materials prior to your hearing to assist you in your preparation. There may be other issues relevant to your case, such as a defective or inadequate notice, that you may wish to address. Your child’s hearing may be scheduled in a group hearing setting where other individuals will also be presenting their case. For those who have already received your prior authorization decision, your appeal can discuss the subjects of whether DHHS has the authority to implement a 75 hour cap on children’s therapy services AND whether the hours that the physician requested for your child are medically necessary. We believe you should state both of these arguments during the hearing, as well as any others that you feel are relevant, such as ineffective notice or an inefficient prior authorization process. It is best to note all of the concerns in your letter requesting a fair hearing so that the arguments are in writing. DHHS may object to arguments about the legality of the 75 hour cap because you did not appeal within 30 days of the newsletter. You will need to let the hearing officer know if you or your provider were told by DHHS at any time to wait until you have completed the prior authorization process before appealing. If DHHS objects to the any of your arguments and the hearing officer rules that they cannot be addressed, you should ask that all of this be noted in the record. If you are allowed to argue these points, P & A may be able to provide you with materials prior to your hearing that you can submit to in order to address these topics. When presenting the medical necessity part of your case, be prepared to justify the hours that your doctor recommended. It would be very helpful to have your doctor and/or therapist testify on your behalf to explain their recommendations.-
I was told by the Director of Appeals, Robert French, that I could not file an appeal for a fair hearing without a decision of denial for the additional units. He was unaware of what I should do and who I should contact for details. I informed him of Christopher Lykes and gave him his phone number. He said he would look into the matter.
I found the following articles:http://carolinafinds.com/blog/sc-cuts-disabilitieshivaids-funds-approves-possible-loan-for-heritage-golf-tourney/
SC Cuts Disabilities/HIV/AIDS Funds, Approves Possible Loan for Heritage Golf Tourney
18 March 2010, 4:48 pm In the same budget that would eliminate all Department of Disabilities and Special Needs programs except for people who live in institutional settings, and earlier this month voting to cut all HIV/AIDS funding from the state budget – becoming the first state to propose elimination the entire said budget, the South Carolina House of Representatives voted 69-43 to make available a 10 million dollar loan for the PGA Heritage Golf Tournament in case they have not captured another sponsor for next year’s event. The tournament is held on Hilton Head Island each year, the week after the Masters in Augusta, and is currently sponsored by Verizon, a sponsorship that ends this year. The loan was approved after cuts to other areas of the state budget and according to Nikki Haley, “In a budget year like this, they raided the insurance trust fund — a fund that’s meant to protect consumers after hurricanes and natural disasters — to lend money to a golf tournament. That is so far removed from what our taxpayers want,” washingtonexaminer.com/economy/ap/after-making-other-cuts-sc-lawmakers-vote-to-keep-10m-loan-to-pga-tournament-in-state-budget-88247757.html#ixzz0iXZYu0p7 -
How does this make sense?
http://www.facebook.com/note.php?note_id=355608302915 Budget Cuts - IMPORTANT INFORMATION PLEASE READ
by Richland/Lexington Disabilities and Special Needs Board on Thursday, March 11, 2010 at 2:11pm Date: March 10, 2010
To: Consumers, Family Members, and Other Concerned Citizens
From: Mary S, Leitner, Executive Director
Richland/Lexington Disabilities and Special Needs Board
As you know, the House Ways and Means Committee adopted a budget plan for Fiscal Year 2010-2011 that included a $47 million state funding cut to the South Carolina Department of Disabilities and Special Needs (DDSN). The Ways and Means Committee members recognize that an error was made in the Committee’s computations, and we have been assured that a way has been found to prevent DDSN from experiencing the entire 28% reduction in state funding. Chairman Cooper made a statement indicating “…I plan on offering an amendment when the budget is debated on the House floor that will redirect $22.3 million of state funds to DDSN that can be used as their state match.” We are very grateful for this support.
There is still a shortfall of $24.7 million in state dollars. We need this funding.
Remember, DDSN uses these state funds to match Medicaid – so, many more millions of dollars will be lost. This loss of revenue could impact YOUR services. Those of you who receive benefits through one of our state’s Medicaid Waivers might find that the Mental Retardation/Related Disabilities Waiver (MR/RD Waiver), the Head and Spinal Cord Injury Waiver (HASCI Waiver), Community Supports Waiver (CSW) and the Pervasive Developmental Disability Waiver (PDD Waiver) and all that they fund would be significantly reduced or come to an end. Your Service Coordinator’s caseloads will continue to rise. Early Intervention services could continue to be eliminated. State funded respite and family support will be eliminated. Day services would be available only to those consumers receiving residential services. We must work together to prevent such a disaster for many of the people we serve and their families.
As the services we provide decrease, the waiting lists will increase. Those of you who have infants and children in school need to advocate so the services will be available when you need them.
These budget cuts will impact the State of South Carolina. We need to prevent a rise in unemployment because family members are forced to leave their jobs because they must stay home to provide care that is no longer funded. Remember, Medicaid revenue generates jobs such as personal care aides, respite caregivers, day programs staff, service coordinators, early interventionists. This funding also pays for goods provided by companies that will lose business (diapers, wipes, nutritional supplements, etc.). This funding allows DDSN to provide services that enable many family members to work.
I would like to thank those of you who have already contacted your legislators. Many of them have a better understanding of the critical situations being faced by our state’s most vulnerable citizens. But – we need to continue our advocacy effort.-
http://www.scjustice.org/Brochures/Focus%20on%20Kids/Focus%20on%20Kids%20full%20budget%20no%20embargo%20no%20add.pdf
Behind the Numbers
An Overview of State Budget Cuts And Their Impact on South Carolina’s Children
Presented by Focus On Kids A Project of South Carolina Appleseed Legal Justice Center
March 2011
DEPARTMENT OF DISABILITIES AND SPECIAL NEEDS
AGENCY OVERVIEW
South Carolina’s Department of Disabilities and Special Needs has authority over the state’s services and programs for the treatment and training of people with mental retardation, autism, head or spinal cord injuries and conditions related to each of these four disabilities. DDSN currently serves more than 30,500 clients, including about 11,500 children. About 84% of these individuals live at home, mostly with their families, where they generally prefer to receive services. Home services range from stipends, which allow a parent to stay home during the day and care for a child, to caretakers and therapists coming into the home, allowing a parent to go to work or the grocery store. These latter services are generally referred to as respite services. Funds available for respite services are very limited, and demand appears doomed to always outpace supply in South Carolina. Every cut is felt dramatically. The remaining individuals served by DDSN have needs that cannot be met at home and require services provided in community-residential settings or in one of DDSN’s five regional centers. About 4,000 people receive 24-hour residential care in community settings, and another 800 people, those with the most severe disabilities, live in the regional centers, which offer specialized training, supervision and 24-hour-a-day health care.
A CLOSER LOOK AT THE NUMBERS • For FY10-11, the General Assembly appropriated $128.9 million in state funds for DDSN – a 46% reduction since FY08-09.
• DDSN suffered its deepest cuts yet to recurring state funds in FY10-11. That portion of its budget decreased by almost 15% from the previous year.
• For FY10-11, $172.2 million in state funds drew down $348.5 million in matching Medicaid funds. We will not know how many Medicaid dollars South Carolina missed out on as a result of state-budget cuts until the end of FY10-11. In FY09-10, South Carolina lost $31 million due to funding cuts.
• DDSN operates five regional centers, serving about 775 South Carolinians with the most severe disabilities. The regional centers provide specialized training, supervision and around-the-clock care. In FY10-11, the centers had $295,000 cut from their operating budgets.
• In FY09-10, major program budgets were slashed, including $10 million in state funds from the Mental Retardation Community Residential Program and $7 million from the Mental Retardation In-Home Family Support Program. State funding for DDSN’s regional centers was halved that year as well.
THE REALITY BEHIND THE NUMBERS INCREASED DEMAND MAY GO UNMET
Cases are piling up at DDSN. Progress in science and medicine saves lives, but it also means more children and adults require services to meet their special needs. DDSN now receives at least 500 new requests for eligibility determination per month. Meanwhile, turnover in DDSN’s service system is very limited as severe disabilities are lifelong. Adding stress to the lives of many DDSN clients is the fact that many services have been paid for with nonrecurring funding for the past several years. Will the money be there next year? The disabilities will be. Without permanent recurring funding, these South Carolinians are vulnerable year after year. Of FY10-11’s $40.4 million in one-time state funds, which are used to address recurring needs, a DDSN official wrote, “If that funding is not restored in some fashion, it would be disastrous for individuals receiving or needing services.”
In addition, because of our state’s budget crisis, the number of individuals on DDSN’s waiting lists continues to grow, as do the waiting periods. Additional funding is needed to relieve the 2,147 individuals awaiting DDSN’s Medicaid-funded mental retardation, autism and head and spinal cord services.
DIMINISHED SERVICES
• Child Development Centers were reduced from five to two in January 2009. Ninety children lost access to those service offerings at the time. Since 2009, DDSN has funded the two remaining centers with non-recurring funds, as required by proviso.
• DDSN lost 70 beds in FY10-11, extending waiting lists by that number.
• Having lost $2.6 million for family-support stipends and respite since October 2008, those services were further reduced in FY10-11. DDSN did not respond to a request for specific numbers.
• In June 2007, 6,864 families received day services from DDSN. In June 2010, 7,077 did. This low growth is worrisome given the slow turnover rate among DDSN clients, who typically require assistance for life.
• Summer Services accommodate just over 3,000 children with disabilities who attend public schools and/or whose parents are working or need respite but have no extended family or other caregivers available during summer work hours. Summer Services include camps, daycare, therapy and other support tailored to the individual. In many cases, this program enables families to keep their disabled children out of residential placement. The number of children In Summer Services has grown by only 610 students in five years. DDSN did not provide specific enrollment numbers, stating only that, “There are some people turned away due to limited funding and capacity even in good years. Summer services had been funded about $700,000 each year until 2009, when it was reduced to about $300,000. In 2010 these services were funded using respite/family support funds.”
• In April 2010, DDSN eliminated 50 positions. In addition to direct care providers, positions lost include data coordinator, human-service coordinator, supply specialist and program coordinator. DDSN declined to comment on how personnel losses impact services.
COURT RULES AGAINST CUTS In November 2010, a federal judge ruled against Gov. Mark Sanford, DHHS and DDSN – ordering the state to reverse budget cuts that could have forced the institutionalization of three Upstate residents with special needs in violation of the Americans With Disabilities Act. At the center of the trial was the issue of in-home care for people with special needs. To save money, the state attempted to eliminate the services that enabled the three plaintiffs to live at home and pursue some normal activities, such as work. The judge held that the plaintiffs’ lives would be drastically upended as a result of the budget cuts, and federal law prohibits compelling people with special needs into restrictive environments when less disruptive ones are available. The ruling puts the state on notice that courts are serious about enforcing the federal law. Continued cuts to in-home services will open the state to further costly litigation that would divert funds from services. Furthermore, at-home care is usually less expensive than institutionalization. PROVIDERS GO UNCOMPENSATED As service-provider costs have risen, DDSN has reduced its reimbursement rates four times in the past five years. The General Assembly made these cuts permanent in 2011. Access to quality care demands fair compensation. If the state cannot afford to fully reimburse its service providers, it will not be long before they tire of being underpaid and turn DDSN clients away. DDSN’s budget request for FY11-12 includes an appeal for $2.2 million in new state funds in order to compensate service providers for the actual cost of care. -
TOO ADD INSULT! The budget cuts from March 2010 cost SC from receiving a large amount of stimulus money. If the budget cuts could have been resolved we would have received the stimulus money and would not have had to bail out Medicaid this year out of our SURPLUS fund. Amazing how SC has a surplus of funds exceeding the amount they had to cut from Special Needs programs.
http://www.foxcharlotte.com/news/local/NC-Officials-Say-Agreement-Brings railroad-Grant-118467509.html NC Officials Say Agreement Brings Railroad Grant Story Created: Mar 22, 2011 at 6:47 PM EDT Story Updated: Mar 22, 2011 at 6:47 PM EDT RALEIGH, N.C. - Transportation officials said Tuesday they've reached an agreement that will allow them to obtain $461 million in federal grants to improve passenger train service between North Carolina's two largest cities. The pact will allow faster and more frequent passenger service between Charlotte and Raleigh. North Carolina had to obtain an agreement with Norfolk Southern (NSC - news - people) Railway and Amtrak to qualify for the grants. The Federal Railroad Administration had been concerned that slower freight trains might hamper the new service. U.S. Transportation Secretary Ray LaHood said the grants are part of President Obama's vision for a national high-speed rail system that "will link 80 percent of Americans in the next 25 years, and lay the foundation for an economy that moves people, good and information quickly, safely and reliably than anywhere else in the world." "Today, we have made significant progress towards that goal," he said in a statement. Currently, part of the route between Charlotte and Raleigh is shared with Norfolk Southern freight trains. For passengers, that sometimes means long delays when Amtrak passenger trains must stop and allow a freight train to pass.-
Priorities from the government to its citizens are not the same
The federal government has $461 million for a train system that no one wants, will save 13 travel time and Wisconsin and Ohio both turned down! I am so glad the federal government is worried about travel times when children are being denied LIFE SAVING MEDICALLY NECESSARY SERVICES! But hey the kids could take a fast train from charlotte to Raleigh and save a little time. I am sure that will make up for the loss in therapy.
Because of all of this I am unclear as why my child’s Medically Necessary Therapy’s MIGHT been cut in half so I am unclear how to argue my case but I have listed several reasons below.
I would like to point out the federal Medicaid program mandates Early Periodic Screening Diagnosis and Treatment (EPSDT) for children fewer than 21. EPSDT mandates screening and treatment necessary “to correct or ameliorate a physical or mental condition” and all states must provide this treatment promptly and for as long as needed. EPSDT services are mandated by 42 U.S.C. § 1396a (a)(10). There is case law that defines what EPSDT meant when they stated “to correct or ameliorate a physical or mental condition.”
In Collins v. Hamilton, Indiana district court Judge Young, now Chief Judge Young held that defendants’ standing policy of refusing to provide necessary long-term residential treatment to mentally ill children violated federal Medicaid law. 231 F. Supp. 2d 840 (S.D. Ind. 2002), aff’d 349 F.3d 371 (7th Cir. 2003). Collins involved a class action challenge to a policy enforced by the former heads of the FSSA. The Collins defendants argued that “the psychiatric services to which an EPSDT child is entitled involve only ‘active’ treatment” and that the phrase “to correct or ameliorate” did not anticipate long-term residential care. The Collins district court referenced a well-known dictionary that defined the term “ameliorate” as “to make better or more tolerable.” Noting that “[t]here is no time limitation evident in this definition,” the district court held that “[r]equired treatment includes anything which is to make a condition, even a long-term condition like mental illness, more tolerable.” For that reason, the district court found that the defendants’ standing policy of refusing to provide long-term residential treatment for patients for whom such treatment had been found necessary by an EPSDT screening violated the federal Medicaid Act, entitling the class members to summary judgment and a permanent injunction. The Seventh Circuit Court of Appeals affirmed Judge Young’s decision, specifically noting that “[w]e see no reason why residential treatment, even if long-term, cannot consist of ‘active treatment’ that ‘improves or ameliorates’ a patient’s condition.” 349 F.3d at 375-76. Because Indiana was required to fund the cost of placement in the long-term treatment facility at issue, the Seventh Circuit affirmed the district court’s decision to grant summary judgment and issue a permanent injunction.
In Ekloff v. Rodgers - Incontinence Briefs for Disabled Children Deemed MedicallyNecessary to Prevent Skin Breakdown, the United States District Court for the District of Arizona had to determine whether incontinence briefs prescribed as medically necessary to prevent skin breakdown for disabled children were covered by Arizona’s Medicaid program. 443 F. Supp. 2d 1173 (D. Ariz. 2006). At issue in that class action was whether preventative treatment is required under the phrase “to correct or ameliorate.” Recognizing that Collins is “the only case nationwide that even makes an attempt to define ‘correct or ameliorate’ for purposes of Medicaid,” Ekloff applied the Collins definition and held that [c]learly, the incontinence briefs are meant to make the children’s condition better or more tolerable by preventing skin breakdown. The briefs are used to not only prevent future pain from open skin sores but to facilitate and maximize their daily opportunities as well as to make their condition as tolerable as possible by not forcing them to suffer the needless pain of skin sores. This seems to be the very essence of what Congress had intended in their Medicaid statute. Ekloff reviewed the legislative history of EPSDT and concluded that it there “is a very strong inference to be inclusive rather than exclusive.” (citing H.R. 3299, 101st Cong. § 4213(1989) (EPSDT was crafted to “be the nation’s largest preventative health program from children.”)). Ultimately, Ekloff rejected the defendants’ argument that the phrase “to correct or ameliorate” means that the state only needs to cover services that correct or improve conditions that actually exist. Under that logic, Ekloff noted that the state would “exclude such remedies as antipsychotic drugs until someone has already had a bout of insanity rather than prevent it in the first place.” Id. at 1181. Ekloff rejected the state’s narrow interpretation and concluded that it was “impossible to integrate within the wider framework of Medicaid law.” For these reasons, Ekloff held that the prescribed incontinence briefs were encompassed by the phrase “to correct or ameliorate” and that the state was obligated to provide them under federal Medicaid law. I request that you follow the definition of “ameliorate” used by the district courts in Collins and Ekloff—“to make better or more tolerable.” In affirming the Collins district court, the Seventh Circuit did not take issue with the district court’s definition or application of the term, even commenting that “[w]e see no reason why residential treatment, even if long-term, cannot consist of ‘active treatment’ that ‘improves or ameliorates’ a patient’s condition.”7 349 F.3d at 375-76. Moreover, a comprehensive definition of the term complies with Congress’ intent to be inclusive rather than exclusive with EPSDT. 443 F. Supp. 2d at 1180; H.R. 3299, 101st Cong. § 4213
(1989).
Most recently noted and more on the lines of my appeal in the United States District Court Southern District of Indiana Indianapolis Division A.M.T VS. Michael A. Gargano, (in his official capacity as Secretary of the Indiana Family and Social Services Administration) In late 2009 or early 2010, each of the Plaintiffs, through their respective medical providers, sought authorization for their therapies to continue at the previous rates prescribed by their treating physicians for an additional six months. At least two of the named Plaintiffs had their requested treatments denied or modified. At issue here is whether prescribed therapies that would prevent regression are covered under the Medicaid program. Defendants argue that therapies to maintain a level of functionality where further progress can no longer be expected or progress is minimal in relation to the time needed to achieve that minimal progress is not covered because it is “solely for the purposes of sustaining an individual at a particular level, rather than increasing or improving their abilities.” Defendants contend that they should be allowed to deny the prescribed therapies and wait for the children to be able to “show that they’ve regressed and need additional therapy due to the ability to progress” before covering the treatment. The Court finds that Defendants’ practice and policy of denying or limiting prescribed therapies as maintenance therapy without considering a disabled child’s potential for regression violates federal Medicaid law. As Defendants admit, the plain meaning of a federal statute controls if it is clear. [Dkt. 93 at 13 (citing MBH Commodity Advisors, Inc. v. Commodity Futures Trading Comm’n, 250 F.3d 1052, 1060 (7th Cir. 2001).] The Court finds that the plain meaning of the term “ameliorate” encompasses therapies that prevent regression. Although a child with a chronic condition may reach a level where further progress can no longer be expected or where progress is minimal in relation to the time needed to achieve that minimal progress, therapies that prevent regression still ameliorate the condition by making it more tolerable. Specifically, therapies that prevent regression facilitate and maximize daily opportunities and prevent a child from suffering the needless degeneration of functionality. This was Congress’ intent with EPSDT. See Ekloff, 443 F. Supp. 2d at 1180; Collins, 349 F.3d at 375-76. Additionally, there is no time limitation on the requirement that services be provided to ameliorate a defect or condition. 42 U.S.C. § 1396d(r)(5). Because therapies that prevent regression ameliorate a disabled child’s condition, they are covered under federal Medicaid law. 42 U.S.C. § 1396a(a)(10); 42 U.S.C. § 1396d(a)(4)(B); 42 U.S.C. § 1396d(r)(5).
Attached is a copy of Dominick’s letter from her Primary Care Physician. She clearly states that these services are medically necessary to treat Dominick’s Autism and Sensory Integration Dysfunction. This being said Medical Necessity defined under Medicaid law already encompasses Therapy as an approved Medical Necessity treatment so for DHHS to argue Medical Necessity would be mute due to the fact they are willing to cover therapy treatment now and in the past. However because of EPSDT guidelines DHHS does not have the authority to limit therapy’s for children like Dominick. When first diagnosed my greatest fear was that my son would never look me in the eye and say Mommy or I love you. Due to his MEDICALLY NESSISARY speech and occupational therapies my son has looked me in the eye and said Mommy I love you. My son still has many obstacles to overcome. He does not process pain. Last May he was bitten 24 times on his legs by fire ants. Never once did he flinch, cry, scream or react. I am constantly wondering if he is hurt. He has no way of communicating to me if he is and he might possibly not even know if he is. He is also classified as a “Wanderer”. He has no fear and does not understand dangerous situations. He is unaware of his surroundings and where he is. He takes of running all the time. We have had two close calls with him running into the road and traffic. With Early Intervention we have made so much progress. The therapy my son receives is working. Because Dominick’s condition is not a black and white condition but a spectrum there is no way for another pediatrician or healthcare professional that has never seen Dominick to know how much therapy he needs or how he is benefiting from these therapies. I argue that a third party should be able to deduce weather the primary physician is over prescribing however that third party has to be held accountable not only by the MD he has after his name but the time he has invested into the patient. Does any doctor have the right to decide a medical necessity without examining the patient? That would be a huge ethics issue and would not be permitted in any state. Thanks to Dr. Downing, Dr. Stegman and the therapists at Tega Cay Speaks Dominick is progressing rapidly under his Therapy regime and if you are to reduce these according to Dr. Downing, Dr. Stegman and the therapists at Tega Cay Speaks you will see regression. Once again I want to emphasize these therapies are MEDICALLY NECCESARY per Dr. Downing’s letter to DHHS and is my son’s, Dominick’s, right under the EPSDT guidelines and case law stated within.
I would also like to note that Governor Halley went on record in Charleston at her town hall meeting saying, “Get a letter from your doctor saying we need to continue them on these therapies and that will happen. I’ve confirmed it. I have checked it. If you have any problems you let me know. ” WELL I AM LETTING YOU KNOW. She also went on to say that, “I think the bulletin came out and gave you very little time we are not going to let that happen anymore. You deserve to have more time these are your family members.” (http://www.youtube.com/watch?v=YenbkJ46_yU) (Minute 39:15)
So I want to stress the fact that if the Governor not only said that we were not given the proper notice and also that our therapies would not be cut with a doctor’s letter requesting our therapies to remain the same then how does DHHS have the authority to do this? I would like to request that the governor be informed of this injustice and request her to be present at the hearing.
I would also request that all departments of DHHS be informed and have knowledge of the procedures in place. The lack of knowledge in the different departments about the cut of hours from therapies and not knowing who has the answers has been extremely difficult on the doctors, therapists, parents and most importantly the children. This has taken valuable time away from my child. I have spent countless hours researching, writing, reading, calling, making phone calls and going to extra appointments that I could have used in helping and working with my child myself. He depends and as a part of his Autism DEMANDS he lives to a schedule. Any interruptions in his schedule can set him back. He has started to regress in his therapy sessions by not being as cooperative in the tasks and in the work we do with him at home. I was informed that if I did not have my appeal in by April 1st, 2011 we would not be able to appeal and according to the appeals process this is a gross injustice of our rights. I also request that DHHS mail me a copy of Dominick Chirico’s case file and copies of any other documents that DHHS will use at the hearing. I would also like a copy from DHHS of the letter that reduced my son's therapies since I have yet to receive anything from them.
In closing: I believe that the DHHS was counting on parents lack of information about the procedure to handle this matter, the difficulty of finding correct information, the lack of sufficient time given to receive an approval and DHHS counting on parents getting frustrated, giving up and walking away. I would like request Dominick Perry Chirico’s Therapy schedule as prescribed by Dominick’s primary physician to continue as deemed medically necessary by Dr. Downing. 1 hour a week for Speech Therapy and 1 ½ hours a week for Occupational Therapy while my case is in the appeals process. And I once again ask you to refer to the case history and allow Dominick to continue his therapy per request of his physician Dr. Downing so as to “correct or ameliate (to make tolerable) a physical or mental condition.” I am truly grateful for all the help he has already received from the state of South Carolina and DHHS. I believe with all my heart that my son will be able to Main Stream later. I want him to be able to depend upon himself as he grows older. I do not want him as an adult to depend on any services. With Early Intervention this is possible. By denying him the critical therapy he needs you are only condemning him to a life of burden on a system that is already stretching to its extremes. The rate of Autism Spectrum Disorders is growing every year at an alarming rate. Just days after my son was diagnosed the CDC finally announced it as “A Public Health Crisis”.
Please help our children.
Sincerely,
Deva Potter Chirico Mother and advocate to Dominick Perry Chirico age 3 living with Autism Spectrum Disorder, ASD and Sensory Integration Dysfunction
Cc: Jerri Davison, Attorney Protection and Advocacy for People with Disabilities, Inc. 545 N. Pleasantburg Drive, Suite 106 Greenville, SC 29607
Tuesday, October 26, 2010
Feeling Down & DAMN THE PRONOUNS You and I
Who has time to keep up with a blog? I need another me to keep up with myself. This is going to be all over the place like everything in my life and my head so I apologize in advance. It has been a while since I wrote last. So much progress has been made.
Dominick has changed so much and made so many strides. He now waves correctly to others. Before he would wave with his hand facing him own face instead of away towards others. He is asking for items more frequently and with more descriptives. He still has to be prompted to do so.
He is starting to say "I want" but has to be prompted. He gets confused easily when trying to ask for something. He tends to say "more please" to get something. Trying to get him to ask for either for example a red car or a blue truck he might say "want more please red" or "blue truck please" or he might get it right and say "I want red car". It is amazing that we are getting him to pick out an object from different options. Pronouns.... AHHHHHH! You and I. You want, I want. I will prompt him, "Say please" or "Say I want ..." and he responds with, "Say please" or "Say I want...” It confuses him sometimes and breaks my heart to see him get frustrated when he is trying to get it right and he just doesn't know what he is supposed to say to just get the damn red car or blue ball or piece of candy from me.
Food... Most toddlers can be temperamental eaters. Go through fazes of eating everything to not wanting to eat anything. Dominick goes through these phases also but on a whole other level. He used to eat fish sticks but wont anymore. He will sometimes eat chicken nuggets but only the Tyson dinosaur ones and McDonald's. Will not eat chicken tenders or any other chicken of any kind. He likes grilled cheese but not from a restaurant. Only ones we make at home, SOMETIMES. Loves Taco bell crunchy tacos. He eats them upside down. Will not eat any other tacos even if I make them with the Taco bell brand mix. We have to go to Taco bell and get them. They have to have the wrapper. Loves cereal some days. Loves Dunkin Doughnuts cinnamon munchkins. Not doughnuts just munchkins. BACON BACON BACON! Makes him gag from time to time but will continue to eat it no matter what. He will eat apple slices and grapes sometimes. He just stopped eating the Gerber toddler chicken mashed potatoes and carrots meal. The ONE balanced meal he would eat he won’t eat anymore.
Marty and I are starting to hit a major wall with the whole food issue. Terror, fear, frustration are constant when it comes time to feed Dominick. I want someone to walk in and give us the magic answer and cure to the whole food issue. When I see other children eat or hear other parents talk about how great an eater their child is I feel such envy. When others tell me how "It is just a phase" and "Oh my little one just started eating again he will soon" I want to scream because they just don't understand how most food makes him gag and he doesn't want to try to eat anything new. I wish I knew if it was a texture thing or a color thing or a smell thing.
So many questions I have he may be able to answer one day when he has the language skills but for now it is a guessing game.
He has dropped a lot of his repetitive behaviors and picked up a few new ones. He really wants to try to have a conversation with me. He uses a few words mixed in with his jibber jabber and really is trying to have a conversation with me. It makes me feel such joy that he is wanting to try to reach out and communicate and so sad at the same time because he has such a large vocabulary now and not a clue how to use it. It is kind of like having a garage full of tools and not knowing the first thing how to fix a car or build a bird house. I know how to use a wrench and how to use a saw and how to use a drill. I just don't know how to use them all together to build one thing or fix something.
Dominick is becoming one very strong little boy. In just the past month I have had a black eye and a split lip. I am starting to become a little scared of how strong and how large his tantrums are going to be as he gets older. I am great at helping him control them and finding new ways for him to get in control. I literally get on the ground with him and use my arms, legs, well my whole body to get him under control. He doesn't just hit and kick. His whole body goes out of control and he thrashes with such a terrifying force. I can get him out of it pretty fast. I squeeze him and he likes it. I can sometimes predict an "episode" coming on and can get him to squeeze before it becomes a full blown "episode". We have started using breathing to help calm him down. I get him to look me in the face and take deep breaths with him. It used to bother me when these melt downs happened in public but I just am becoming numb to people’s reactions to it. I care more about helping my child than what people are seeing or thinking.
The past two weeks have been really hard. My sister described it best. It feels like a lead blanket is on me and I can't get up. I am allowing myself to feel down. I am giving myself permission to kick myself. I am giving myself permission to have a pity party. That is why I am writing this now. That is why I started this. This is my release. Well not that that has been said and is done I can get back to being super mom. Thanks for allowing me to vent.
Dominick has changed so much and made so many strides. He now waves correctly to others. Before he would wave with his hand facing him own face instead of away towards others. He is asking for items more frequently and with more descriptives. He still has to be prompted to do so.
He is starting to say "I want" but has to be prompted. He gets confused easily when trying to ask for something. He tends to say "more please" to get something. Trying to get him to ask for either for example a red car or a blue truck he might say "want more please red" or "blue truck please" or he might get it right and say "I want red car". It is amazing that we are getting him to pick out an object from different options. Pronouns.... AHHHHHH! You and I. You want, I want. I will prompt him, "Say please" or "Say I want ..." and he responds with, "Say please" or "Say I want...” It confuses him sometimes and breaks my heart to see him get frustrated when he is trying to get it right and he just doesn't know what he is supposed to say to just get the damn red car or blue ball or piece of candy from me.
Food... Most toddlers can be temperamental eaters. Go through fazes of eating everything to not wanting to eat anything. Dominick goes through these phases also but on a whole other level. He used to eat fish sticks but wont anymore. He will sometimes eat chicken nuggets but only the Tyson dinosaur ones and McDonald's. Will not eat chicken tenders or any other chicken of any kind. He likes grilled cheese but not from a restaurant. Only ones we make at home, SOMETIMES. Loves Taco bell crunchy tacos. He eats them upside down. Will not eat any other tacos even if I make them with the Taco bell brand mix. We have to go to Taco bell and get them. They have to have the wrapper. Loves cereal some days. Loves Dunkin Doughnuts cinnamon munchkins. Not doughnuts just munchkins. BACON BACON BACON! Makes him gag from time to time but will continue to eat it no matter what. He will eat apple slices and grapes sometimes. He just stopped eating the Gerber toddler chicken mashed potatoes and carrots meal. The ONE balanced meal he would eat he won’t eat anymore.
Marty and I are starting to hit a major wall with the whole food issue. Terror, fear, frustration are constant when it comes time to feed Dominick. I want someone to walk in and give us the magic answer and cure to the whole food issue. When I see other children eat or hear other parents talk about how great an eater their child is I feel such envy. When others tell me how "It is just a phase" and "Oh my little one just started eating again he will soon" I want to scream because they just don't understand how most food makes him gag and he doesn't want to try to eat anything new. I wish I knew if it was a texture thing or a color thing or a smell thing.
So many questions I have he may be able to answer one day when he has the language skills but for now it is a guessing game.
He has dropped a lot of his repetitive behaviors and picked up a few new ones. He really wants to try to have a conversation with me. He uses a few words mixed in with his jibber jabber and really is trying to have a conversation with me. It makes me feel such joy that he is wanting to try to reach out and communicate and so sad at the same time because he has such a large vocabulary now and not a clue how to use it. It is kind of like having a garage full of tools and not knowing the first thing how to fix a car or build a bird house. I know how to use a wrench and how to use a saw and how to use a drill. I just don't know how to use them all together to build one thing or fix something.
Dominick is becoming one very strong little boy. In just the past month I have had a black eye and a split lip. I am starting to become a little scared of how strong and how large his tantrums are going to be as he gets older. I am great at helping him control them and finding new ways for him to get in control. I literally get on the ground with him and use my arms, legs, well my whole body to get him under control. He doesn't just hit and kick. His whole body goes out of control and he thrashes with such a terrifying force. I can get him out of it pretty fast. I squeeze him and he likes it. I can sometimes predict an "episode" coming on and can get him to squeeze before it becomes a full blown "episode". We have started using breathing to help calm him down. I get him to look me in the face and take deep breaths with him. It used to bother me when these melt downs happened in public but I just am becoming numb to people’s reactions to it. I care more about helping my child than what people are seeing or thinking.
The past two weeks have been really hard. My sister described it best. It feels like a lead blanket is on me and I can't get up. I am allowing myself to feel down. I am giving myself permission to kick myself. I am giving myself permission to have a pity party. That is why I am writing this now. That is why I started this. This is my release. Well not that that has been said and is done I can get back to being super mom. Thanks for allowing me to vent.
Monday, June 28, 2010
Would You Rather...?
Do you remember the game "Would You Rather?"
Would you rather "Bite the curb and get kicked in the back of the head -OR- get a paper cut on your eyeball?"
Would you rather "Chew shards of broken glass -OR- sit on a lighted barbecue grill?"
Would you rather "Immerse your naked body in a bathtub of cockroaches -OR- dive naked head first into a pool of chewing tobacco spit?"
This old game I used to play just popped in my head recently. I remember playing "Would You Rather?" a lot when I was younger even up into my adult years. Just a game to make you think what awful, crappy choice would you make between two awful crappy options. What are you limits? What are you capable of and not capable of? What can you bare and endure? What makes you think you can actually do it? CAN YOU DO IT?
Back in the beginning of May Marty, Dominick, Hailey and I had our pictures taken at a beautiful spot called The Dairy Barn by an absolutely amazing and talented photographer (Michelle, Angel Eye Portraits). We have some of the most beautiful pictures taken. At one point Hailey was being eaten by ants. She took her shoes off and was covered with them. She got them off and was okay. Just a few bites. But enough to make her upset and feel pain. Later that night giving Dominick a bath I started washing his legs and feet. I was shocked to see all of the bites all over his legs toes and feet. He was covered with bites. The whole time at the Dairy Barn he did not complain, cry out in pain or act in any way to indicate to us that he was being bitten by ants.
After the shock of seeing this my mind started racing. "Why didn't he cry?" "Why didn't he let me know he was hurting?" "Wait does he hurt?" "Does he feel pain?" Now I am thinking back. Dominick has bruises and bumps all over the place. He runs into walls, he falls down, he thrashes when he is having a fit or tantrum and doesn't stop until he hurls himself into something, he has cut himself a couple of times on the pavement, etc etc etc... And most of the time he never cries. The only time he cries is when he sees me react to him falling or getting hurt. I run to him with my worried, panic face turned on with my arms open to him saying, "My Poor Baby". That is when he turns on the tears.
NO NO NO. Not this. Please don't let it be that he can't feel pain. Wait, Would I rather have him feel pain or not feel pain? Think about it. To have your child not feel any pain. But he could start with self destructive and self harming behaviors. He would have zero clue that he was harming himself. He sometimes still hits his head on the couch or even the hard floor. How would I know if he was physically hurt? What if a bone is broken and he has no idea because he can't feel it?
I went to his Pediatrician with this. Dominick does feel pain. Whew, what a relief! BUT... He is not able to communicate to me when and if he is hurting. Maybe this is something that will be able to change in the future but for now I have to be even more critical and even more vigilant than ever. My son could be hurting and he does not have the words or the behavior skills or the capability to let me know it. So in a sense he is sitting there suffering silently in his own mind.
On top of this Dominick is starting to show some sensory issues. He has a problem with sounds sometimes. I have no idea how these sounds affect him. They could cause him to see something unpleasant, or smell something, or hear something or feel something. We just don't know. Sometimes he just plugs his ears with his fingers and works his own way through it. I most of the time can pick him up, squeeze him, rock him and rub his back and that makes it better for him. When he is feeling stressed and out of sorts, something I can pick up on that is harder for others to tell, I lay him on the couch, put pillows over his body and a heavy blanket over him body. He likes it when I press down on him. It makes him so calm. He hums when I do this. He gets a big grin on his face.
For his birthday he got a trampoline. Nothing too big. It is just 7 feet in diameter and has a 100 pound limit so no bouncing for myself or Marty. He loves to jump and bounce. Dominick has become quite a pro at it. Trampolines have been a huge part of his therapy so I am all about using toys to help him along.
I am looking into Equine Therapy, riding horses, for Dominick. We went to his spring fling party for all the kids in the Special Needs / Early Intervention programs in Fort Mill Schools. They had some horses there that are specially trained for therapy. I took Dominick over to them. He walked up the ramp to the horse. We put a helmet on him. One of the trainers picked up Dominick to put him on the horse. He began kicking and screaming. The trainer said to trust her that he would be fine. WHAT? He was freaking out. The horse didn't react. He didn't flinch. He was so calm. She put Dominick on the saddle and he just stopped. Dominick had a calm over him I have never seen before. He was so happy. He held on to the horn of the saddle and two of the trainers / therapists took him off on the horse. It was amazing. I need to get him a pony.
Therapy is still going well. We have a new speech therapist and she is amazing. Dominick loves her and works great with her. Our in-home therapist from Easter Seals Ashley is engaged and we are so happy for her. She better never leave us. I will have to stalk her. Dominick started Summer School or as they want us to call it Extended Year. I like all of his new teachers. It is only 1 1/2 hours a day and only for a month. He starts back to school on Marty's birthday August 18th. I can't wait for his regular school year to start and for him to get into that routine.
Would you rather "Bite the curb and get kicked in the back of the head -OR- get a paper cut on your eyeball?"
Would you rather "Chew shards of broken glass -OR- sit on a lighted barbecue grill?"
Would you rather "Immerse your naked body in a bathtub of cockroaches -OR- dive naked head first into a pool of chewing tobacco spit?"
This old game I used to play just popped in my head recently. I remember playing "Would You Rather?" a lot when I was younger even up into my adult years. Just a game to make you think what awful, crappy choice would you make between two awful crappy options. What are you limits? What are you capable of and not capable of? What can you bare and endure? What makes you think you can actually do it? CAN YOU DO IT?
Back in the beginning of May Marty, Dominick, Hailey and I had our pictures taken at a beautiful spot called The Dairy Barn by an absolutely amazing and talented photographer (Michelle, Angel Eye Portraits). We have some of the most beautiful pictures taken. At one point Hailey was being eaten by ants. She took her shoes off and was covered with them. She got them off and was okay. Just a few bites. But enough to make her upset and feel pain. Later that night giving Dominick a bath I started washing his legs and feet. I was shocked to see all of the bites all over his legs toes and feet. He was covered with bites. The whole time at the Dairy Barn he did not complain, cry out in pain or act in any way to indicate to us that he was being bitten by ants.
After the shock of seeing this my mind started racing. "Why didn't he cry?" "Why didn't he let me know he was hurting?" "Wait does he hurt?" "Does he feel pain?" Now I am thinking back. Dominick has bruises and bumps all over the place. He runs into walls, he falls down, he thrashes when he is having a fit or tantrum and doesn't stop until he hurls himself into something, he has cut himself a couple of times on the pavement, etc etc etc... And most of the time he never cries. The only time he cries is when he sees me react to him falling or getting hurt. I run to him with my worried, panic face turned on with my arms open to him saying, "My Poor Baby". That is when he turns on the tears.
NO NO NO. Not this. Please don't let it be that he can't feel pain. Wait, Would I rather have him feel pain or not feel pain? Think about it. To have your child not feel any pain. But he could start with self destructive and self harming behaviors. He would have zero clue that he was harming himself. He sometimes still hits his head on the couch or even the hard floor. How would I know if he was physically hurt? What if a bone is broken and he has no idea because he can't feel it?
I went to his Pediatrician with this. Dominick does feel pain. Whew, what a relief! BUT... He is not able to communicate to me when and if he is hurting. Maybe this is something that will be able to change in the future but for now I have to be even more critical and even more vigilant than ever. My son could be hurting and he does not have the words or the behavior skills or the capability to let me know it. So in a sense he is sitting there suffering silently in his own mind.
On top of this Dominick is starting to show some sensory issues. He has a problem with sounds sometimes. I have no idea how these sounds affect him. They could cause him to see something unpleasant, or smell something, or hear something or feel something. We just don't know. Sometimes he just plugs his ears with his fingers and works his own way through it. I most of the time can pick him up, squeeze him, rock him and rub his back and that makes it better for him. When he is feeling stressed and out of sorts, something I can pick up on that is harder for others to tell, I lay him on the couch, put pillows over his body and a heavy blanket over him body. He likes it when I press down on him. It makes him so calm. He hums when I do this. He gets a big grin on his face.
For his birthday he got a trampoline. Nothing too big. It is just 7 feet in diameter and has a 100 pound limit so no bouncing for myself or Marty. He loves to jump and bounce. Dominick has become quite a pro at it. Trampolines have been a huge part of his therapy so I am all about using toys to help him along.
I am looking into Equine Therapy, riding horses, for Dominick. We went to his spring fling party for all the kids in the Special Needs / Early Intervention programs in Fort Mill Schools. They had some horses there that are specially trained for therapy. I took Dominick over to them. He walked up the ramp to the horse. We put a helmet on him. One of the trainers picked up Dominick to put him on the horse. He began kicking and screaming. The trainer said to trust her that he would be fine. WHAT? He was freaking out. The horse didn't react. He didn't flinch. He was so calm. She put Dominick on the saddle and he just stopped. Dominick had a calm over him I have never seen before. He was so happy. He held on to the horn of the saddle and two of the trainers / therapists took him off on the horse. It was amazing. I need to get him a pony.
Therapy is still going well. We have a new speech therapist and she is amazing. Dominick loves her and works great with her. Our in-home therapist from Easter Seals Ashley is engaged and we are so happy for her. She better never leave us. I will have to stalk her. Dominick started Summer School or as they want us to call it Extended Year. I like all of his new teachers. It is only 1 1/2 hours a day and only for a month. He starts back to school on Marty's birthday August 18th. I can't wait for his regular school year to start and for him to get into that routine.
Monday, June 7, 2010
"Dumbing Down" Dominick
Dominick has turned three. At age three Baby Net, the South Carolina agency for early intervention, stops their assistance and services. That means no more in home therapy with Ashley from the Easter Seals, no more financial assistance with his speech and occupational therapy, no more financial assistance with any ABA therapy workshops and any other special needs services. What do we do now that we have a three year old? Who helps us?
Ashley has worked extremely hard with us to file extensions for services. We do not want to lose Ashley. She has played the largest lead role in Dominick getting the help he needs and in guiding me to what I need to do and where to go for help and services. She helped us file for TEFRA which will help us pay for all of his therapies. She helped me file for the extension for her services in working in our home with us. Luckily the day of his birthday we found out that we did receive approval for extension of benefits with Ashley. We are still waiting to hear from SC Dept. of Health and Human Services Disability and Special Services for his TEFRA approval. This could take up to six months.
Dominick is now categorized as "Low Risk" for Intervention Services. These children are the first to get cut from funding. GREAT! We have had to have three different evaluations in the past couple of months. During the evaluations I found myself praying he wouldn’t do that well during them. Great, now I want to “Dumb Down” my kid. I don’t want him to do too well. If he is doing better, if he progresses too much, if he is benefiting from his therapy he might run the chance of losing it. Then he could regress and we would lose all of the progress he has made.
When we first started this journey with Dominick’s Autism I was scared of him not getting better, not talking, not responding to me, not hugging me, not being able to learn, not being able to interact with other people, not being able to say my name or that he loves me, not being able to play sports, not being able to one day have a job and a family of his own. So how do I reconcile the fact that I now have replaced all of these fears with the new ones? Dominick is talking, hugging, kissing, loving, asking for things, playing with other kids, looking me in the eye and talking to me. All of those fears are fading. Now I am so scared because he is doing too well? WHAT? I can’t be happy with his progress because it could hurt him. It could cause him to lose the help he receives.
Dominick has started going to Sugar Creek Elementary School. He was able to attend the last week of school. He will be starting summer school on June 28th. He has Speech and Occupational Therapists. He has a Clinical Psychologist and a Behavioral Specialist. He attends Monday through Thursday for three hours a day.
His first day was pure HELL for me. The drive there was torture. I just wanted to turn the car around and take him back home. We parked the Jeep and put his backpack on him. He was so happy with the backpack on. Grin from ear to ear.
They allowed us to walk him in on his first day. We walked through the halls. Kids are everywhere. Could he get lost in all the chaos of the morning hustle? Would he know where to go if he got lost? He would be so scared and alone. Would one of the older kids make fun of him or bully him? We walked into his classroom. He takes off his backpack and puts it in his cubby which has his name on it. Is he going to miss me or cry for me? Will he be sad all day? NOPE, NOPE & MORE NOPE!
He is looking around and is curious but still is staying close to me. I realize it is time for us to start leaving and I start to feel a flush of panic. I scoop my boy in my arms and squeeze him tight. I do not want to let him go. I kiss him and tell him I will see him very soon and Momma loves him very very much. He is now starting to understand that I am leaving him and he starts to grab me tighter and won’t let me go. I realize I made a huge mistake in telling him I was leaving. It was my selfishness. I forgot that this isn’t about me. It is about Dominick and what he needs and I should have made it easier for him. But it is time for me to cut the umbilical cord. Ms. Morrill takes him from me. He starts to scream for me and tries to get from her and is reaching for me. She grabs a toy car and starts to get his attention. He is calming down. He starts playing. Surprise… He was just fine.
I couldn’t wait for 10:45am. I got to the school at 10:30. I watched the door to open without blinking. Kids were all over the playground. All the sudden I see him. He was holding one of his teacher’s hands. He looked so happy. He saw me and said MOMMY. I grabbed him and held him tighter than I ever have. My sweet little Monkey looked at me and said,”Back Pack”.
Ashley has worked extremely hard with us to file extensions for services. We do not want to lose Ashley. She has played the largest lead role in Dominick getting the help he needs and in guiding me to what I need to do and where to go for help and services. She helped us file for TEFRA which will help us pay for all of his therapies. She helped me file for the extension for her services in working in our home with us. Luckily the day of his birthday we found out that we did receive approval for extension of benefits with Ashley. We are still waiting to hear from SC Dept. of Health and Human Services Disability and Special Services for his TEFRA approval. This could take up to six months.
Dominick is now categorized as "Low Risk" for Intervention Services. These children are the first to get cut from funding. GREAT! We have had to have three different evaluations in the past couple of months. During the evaluations I found myself praying he wouldn’t do that well during them. Great, now I want to “Dumb Down” my kid. I don’t want him to do too well. If he is doing better, if he progresses too much, if he is benefiting from his therapy he might run the chance of losing it. Then he could regress and we would lose all of the progress he has made.
When we first started this journey with Dominick’s Autism I was scared of him not getting better, not talking, not responding to me, not hugging me, not being able to learn, not being able to interact with other people, not being able to say my name or that he loves me, not being able to play sports, not being able to one day have a job and a family of his own. So how do I reconcile the fact that I now have replaced all of these fears with the new ones? Dominick is talking, hugging, kissing, loving, asking for things, playing with other kids, looking me in the eye and talking to me. All of those fears are fading. Now I am so scared because he is doing too well? WHAT? I can’t be happy with his progress because it could hurt him. It could cause him to lose the help he receives.
Dominick has started going to Sugar Creek Elementary School. He was able to attend the last week of school. He will be starting summer school on June 28th. He has Speech and Occupational Therapists. He has a Clinical Psychologist and a Behavioral Specialist. He attends Monday through Thursday for three hours a day.
His first day was pure HELL for me. The drive there was torture. I just wanted to turn the car around and take him back home. We parked the Jeep and put his backpack on him. He was so happy with the backpack on. Grin from ear to ear.
They allowed us to walk him in on his first day. We walked through the halls. Kids are everywhere. Could he get lost in all the chaos of the morning hustle? Would he know where to go if he got lost? He would be so scared and alone. Would one of the older kids make fun of him or bully him? We walked into his classroom. He takes off his backpack and puts it in his cubby which has his name on it. Is he going to miss me or cry for me? Will he be sad all day? NOPE, NOPE & MORE NOPE!
He is looking around and is curious but still is staying close to me. I realize it is time for us to start leaving and I start to feel a flush of panic. I scoop my boy in my arms and squeeze him tight. I do not want to let him go. I kiss him and tell him I will see him very soon and Momma loves him very very much. He is now starting to understand that I am leaving him and he starts to grab me tighter and won’t let me go. I realize I made a huge mistake in telling him I was leaving. It was my selfishness. I forgot that this isn’t about me. It is about Dominick and what he needs and I should have made it easier for him. But it is time for me to cut the umbilical cord. Ms. Morrill takes him from me. He starts to scream for me and tries to get from her and is reaching for me. She grabs a toy car and starts to get his attention. He is calming down. He starts playing. Surprise… He was just fine.
I couldn’t wait for 10:45am. I got to the school at 10:30. I watched the door to open without blinking. Kids were all over the playground. All the sudden I see him. He was holding one of his teacher’s hands. He looked so happy. He saw me and said MOMMY. I grabbed him and held him tighter than I ever have. My sweet little Monkey looked at me and said,”Back Pack”.
Tuesday, May 18, 2010
"I THINK PEE WEE IS AUTISTIC", SAID MOM!
We went to Myrtle Beach back in April. My mom, my sister Shannon, my nephew Sage, Dominick and I. I got a great place at The Ocean Reef. We had a three bedroom condo with a great view of the ocean. There was an outdoor kid’s water park with an Aztec theme. There was also an indoor kid’s water park with a splash pool, water buckets that dump water, a lazy river, indoor pool and three hot tubs. All were heated. There is also a heated outdoor pool.
We played on the beach every day. Dominick stayed away from the ocean until the last two days. Then it was hard to keep him away from the water. We played in the sand and tried to make sand castles but he likes to step on them so it was a little difficult. Shannon and Sage left on Thursday. Marty came down and joined us on Thursday.
Shannon and I took the boys to Broadway to go ride the old Pavilion rides one day. They have the bungee trampolines. You put on a harness that is strapped to bungee cords on each hip. Then you jump up and down on a trampoline. Shannon and I decided to let Dominick and Sage give it a shot. They LOVED it. Sage was trying to back flips no problem. Dominick had a grin on his face ear to ear. He was very upset when he had to get off. We then rode some of the old Pavilion rides. Spinning tea cups, pirate ship, merry go round, caterpillar, kids motorcycle ride and so on. We decided to let them do the bungee trampoline again. Dominick was really going to town this time. Sage and Dominick were both jumping as high as they could. And loving every second of it. It was a great day.
My mom has a little Sheltie named Pee Wee. He is her baby, my little brother and a human in a dog fur coat. She left Pee Wee with my aunt Verna. We were sitting out on the balcony while she was calling to check on her favorite child, Pee Wee. My mom requested that my aunt hold the phone up to Pee Wee's ears so that he could hear his Momma speak. She really missed her baby and I am so happy that she has that little dog, NOT HUMAN BUT A DOG, to keep her company.
My mom got to spend a lot of time with Dominick and learning about his Autism behaviors and symptoms. She in the past thought at times that Dominick just didn't like her. I think she now understands that it is his Autism and not her. Mom and Dominick made up their own little games like making your arms go in circles. He would do it, then she would do it and it would make him laugh. After I got finished explaining to my Mom all about Dominick and his different behaviors and symptoms she looked at me and with the most shocked and concerned face she says, "You know. I think Pee Wee has Autism." I almost wet myself I started laughing so hard. I love my Mom.
We played on the beach every day. Dominick stayed away from the ocean until the last two days. Then it was hard to keep him away from the water. We played in the sand and tried to make sand castles but he likes to step on them so it was a little difficult. Shannon and Sage left on Thursday. Marty came down and joined us on Thursday.
Shannon and I took the boys to Broadway to go ride the old Pavilion rides one day. They have the bungee trampolines. You put on a harness that is strapped to bungee cords on each hip. Then you jump up and down on a trampoline. Shannon and I decided to let Dominick and Sage give it a shot. They LOVED it. Sage was trying to back flips no problem. Dominick had a grin on his face ear to ear. He was very upset when he had to get off. We then rode some of the old Pavilion rides. Spinning tea cups, pirate ship, merry go round, caterpillar, kids motorcycle ride and so on. We decided to let them do the bungee trampoline again. Dominick was really going to town this time. Sage and Dominick were both jumping as high as they could. And loving every second of it. It was a great day.
My mom has a little Sheltie named Pee Wee. He is her baby, my little brother and a human in a dog fur coat. She left Pee Wee with my aunt Verna. We were sitting out on the balcony while she was calling to check on her favorite child, Pee Wee. My mom requested that my aunt hold the phone up to Pee Wee's ears so that he could hear his Momma speak. She really missed her baby and I am so happy that she has that little dog, NOT HUMAN BUT A DOG, to keep her company.
My mom got to spend a lot of time with Dominick and learning about his Autism behaviors and symptoms. She in the past thought at times that Dominick just didn't like her. I think she now understands that it is his Autism and not her. Mom and Dominick made up their own little games like making your arms go in circles. He would do it, then she would do it and it would make him laugh. After I got finished explaining to my Mom all about Dominick and his different behaviors and symptoms she looked at me and with the most shocked and concerned face she says, "You know. I think Pee Wee has Autism." I almost wet myself I started laughing so hard. I love my Mom.
Thursday, April 8, 2010
Get Comfy! This One Might Take Awhile!
Sorry it has been so long since my last update. I would always take full advantage of my insomnia to post an update to this blog. Now days I don’t even have time to indulge my insomnia. Dominick is keeping me very busy. So let me jump right into it.
Dominick now has a Speech Therapist, Heather, who he sees on Wednesday and Friday mornings for 30 minute sessions. He sees an Occupational Therapist, Anissa, on Monday for an hour session. Ashley, our in home therapist from the Easter Seals, still comes on Wednesday for an hour to work with us. The ST and OT is less than a half mile away. Tega Cay Speaks. I should really start playing the lottery more often considering how very lucky we have been with lining up all his therapy. Ashley is such a blessing. Without her I would be sooooooo lost.
Dominick has been making such tremendous progress. Everyone working with him is amazed by his progress. I keep a daily journal of some of his accomplishments.
March 1: Speech Therapy, Dominick went into the gym area and got a sucker, he remembered where they were. He took it into the speech room and brought it to me and said, “Open” “I want sucker”. Both Heather and I were stunned.
March 3: Woke up with Dominick in my bed saying, “I wuve you!” “I pee pee” “Pee pee Potty” I took him to his potty and after a few minutes I almost gave up thinking it was too good to be true. Then the potty started to sing the potty song (Once you go to the bathroom it has a temp sensor on it so it will sing) I think it scared him like he had done something wrong. I reassured him it was okay to go potty.
March 7: Dominick took bubbles to Shannon and said, “Open”
March 8: Dominick participated in about half of the activities at Gymboree. He did sing the bubble song and remembered the actions and movements that go with the song. He has not heard it in over 6 months. He made eye contact with several children and tried to talk to two different children.
March 10: Dominick woke up, walked into living room, picked up my water bottle, drank from it and said, “It is so good, Nummy!” While watching a DVD, I put Dominick on his potty in front of TV and gave him my water bottle. He all the sudden while watching the DVD said, “Oh look.” “ A drum.”
March 14: Bought Dominick a new bath toy. When I showed it to him he asked, “What is that?” With perfect diction!
March 16: Dominick is not feeling well. Very cranky today. Not wanting to make any decisions. Not wanting to participate in any activities or answer any questions. Had to cancel hearing evaluation.
March 18: Dominick is now using, “Stop it” and “No” more. It is exciting that he can now communicate to me when he doesn’t like something.
March 22: We got to OT before Anissa. When she got there Dominick looked at her started to walk into gym room and said to her, “Come On, Let’s Go”. The psychologist opened the door to the gym and I heard Dominick say, “Hello”. Everyone was just laughing at Dominick while watching him in the gym. He is such a HAM today.
March 23: Dominick and I went to swim class. Dominick will not blow bubbles in the water. He did great kicking. He was able to climb out of the pool by himself. Put him in the daycare at the gym. He did just fine. After story time today, just before his nap, he sat up and with each hand he pretended like they were puppets and had them talking to each other. Right hand: Hello Left hand: Hello Right hand: How are you? Left hand: I am fine. How are you? And on and on. It was HILLARIOUS!
March 24: Heather, the speech therapist, did a mini evaluation on Dominick today. She said she is starting to run out of material for him. Says he is progressing much faster than anticipated. Ashley and I worked on getting him to ask for objects by using more descriptions such as color. Ashley says he is doing so great because of all the work I am doing for him. “Patting myself on the back!”
March 26: Dominick is saying, “Mommy” “There’s Mommy” “Hi Mommy” “I Wuve You Mommy”, every day several times a day!
March 28: Went to Hailey’s. Dominick and Kaitlin played together. They tossed the ball back and forth. He even tried to communicate with her. He cried when it was time to leave. Went over to Marcella’s house. He showed off! Dancing and talking. MR. PERSONALITY! Dominick has started saying “Thank you” and “Thanks”.
March 29: According to Anissa Dominick is an “A Type” personality. Meaning he will be very detailed and a great organizer. He is going to be a perfectionist. There is a little girl, Ashlyn, around 10 years old who sees Anissa after Dominick. She is severely autistic. She does not hug her parents and rarely talks or looks at people. Last week she took her nurses glasses and put them on me. She looked me right in the eye. She has tremors and bad ticks. They stopped when she was looking me in the eye. I told her thank you and she got excited and clapped. Then I asked her for “High 5” and she gave me two “High 5’s”. This week when Dominick came out of the gym with Anissa, Ashlyn looked at Dominick and said, “My baby”. She saw he had a monkey on his shirt and she said, “My Monkey”. She touched his shirt and grabbed his hand. They sat in the chairs beside each other. Dominick would look at her and she would look at him too. Dominick tried to talk to her in his Gibber Gabber. They just sat there and held each other’s hand. I am blown away by the connection Dominick and I have both made with her. So is Anissa.
April 1: Went swimming with Shannon and Sage. Sage swam up to Dominick and me. He grabbed Dominick’s arm. Dominick said, “Sage! GO AWAY!” He then tried to either push or punch at Sage. This is great progress! Not excited about him wanting to try to harm Sage but excited because Dominick is trying to communicate more about what he likes and dislikes.
April 4: Easter Egg hunt! While watching TV, Dominick started copying the Progressive Insurance commercial. He knew practically all the words and even used dramatic expressions. I truly believe he has photographic memory. I got video of it. Hilarious. Dominick is dancing to Kyle’s radio show. So cute. Loves dancing with his Mommy!
April 7: Ashley is back from vacation. Yay! Dominick is not having a great, good or even okay day. Not wanting to participate. Regressing and going into his little world again. Doing some of his repetitive behaviors and sounds. We are going to have bad days. They SUCK!
So now you are caught up with Dominick. Now for me! I still have days when I feel like “SUPER MOM”. Able to clean the dirtiest of diapers in a single swipe, able to clean all and organize all and do all and be all and blah blah blah…
Then there are the days when I can’t do anything right. I can’t get task completed. I have 5 million tasks to get done. I am not doing enough to help my son. I am the crappiest wife in the world. I am an awful daughter and sister and friend and mother. I miss my daughter Hailey and I am not doing enough for her. I can’t return phone calls to anyone. I can’t even check my email.
It can take its toll out on you. I need an extra 5 hours in the day! I need a clone. I get no sleep usually. I miss being able to have insomnia and getting stuff done while everyone else sleeps. I have learned I have to make time for me. I have to take care of me! If I don’t I will be no good to Dominick. I also have learned that I need to ask for help. I can’t do this alone.
All of this can add a whole lot of strain to a marriage. There is just not enough time in the day. You have to make time to spend with each other. We had to make time to do something with each other that doesn’t involve ASD or Dominick. Marty and I are taking Shag dance lessons. We get to have a date on Friday nights. We get to go out and laugh. I usually only get to see him 2 maybe 3 nights a week. The second he gets home from work on Wednesday and Thursday I walk out the door. I work on some Friday and all Saturday nights. On Sunday I am so exhausted I don’t want to do anything. Communication is usually only a few words on the phone. All of this can make me feel alone in this sometimes. We are getting through it all! It just takes work!
My dad is the greatest!!! He calls me daily to ask me questions, get updates about Dominick, tell me about something new he heard about ASD, mails me articles from the paper, comes to Dominick’s therapy sessions and on and on and on. I am so proud of him. He told me he just wants to be able to talk to his grandson. He wants to know how to communicate with him and understand what it is like for Dominick. WOW!
On April 1 I put blue string lights up at Lynn’s for Autism Awareness month. Bill and Kitten allowed me to tell everyone there about my story and about ASD. I have been blown away from the stories others have of their own experiences with Autism. Their children, grandchildren, nieces, nephews and friends. I had no idea it has touched so many of these people I see every week. So many people came up to me after to give me a hug, a word of thanks because they had no idea how big of a crisis it has become, to tell me about their loved one, a word of encouragement and a whole lot of praise for being a wonderful mom. All of these people from Lynn’s are such a big part of my life. I see them every week. They make me smile and laugh every day I see them. We tell each other jokes and stories. I have become so attached to them all. I look forward to seeing them. I love them and they are in my heart always.
I have some items to sale for Autism Awareness. Car and fridge magnets, pins, decals, bracelets and key and card chains. Crickett has been helping me sell them at Lynn’s. She is such a sweet heart. If anyone would like to purchase anything please contact me. Or if you would just like to make a donation I can help point you in the right direction. The family-run MOSI Foundation will match your contribution up to $1000.00 for a limited time. This is who I plan on making my contribution to. With you help we will be able to fund more research for these amazing kids.
I want to post someone else’s blog post which sums up everything I want you all to know about Autism Awareness, me and my amazing, funny, brilliant son Dominick.
BE AWARE, BY: BOTH HANDS AND A FLASHLIGHT
Be aware that if you’ve met one autistic person, you’ve met one autistic person.
Be aware that just because people don’t talk doesn’t mean they can’t communicate. And it certainly doesn’t mean they aren’t intelligent.
Be aware that sometimes our kids can’t help it. They are trying, incredibly hard.
Be aware that an open mind and a closed mouth are sometimes the best response to a situation.
Be aware that our sons and daughters are awesome.
Be aware that we will kick the butts of anyone who says otherwise.
Be aware that many public figures and organizations talking about autism don’t necessarily speak for a whole lot of us.
Be aware that a lot of the people who talk the most also have the biggest agendas and the most to profit from.
Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand.
Be aware that price gouging on materials and equipment infuriates us. We know some companies do it because we have to have what they sell.
But be aware that we are now a people’s movement, and the power is shifting to us. We will find new solutions, and they will be better because we made them. And we won’t mourn when unethical companies go out of business.
Be aware that we are loyal and faithful to those who support us and unforgiving in our pursuits against those who take advantage of our children and us. And we have very, very long memories.
Be aware that we tend to be very fired up about our children and their needs, and we aren’t sorry about it.
Be aware that if anyone messes with one child, they mess with all of us.
Be aware that we are unapologetic about getting funding for special education, disability services, or other supports. If people want to argue against these programs, that’s their right. But be aware that if anyone says our kids aren’t ‘worth it’, rather than debate them on the merits or lack thereof, we’ll just tell them to go to hell.
Be aware that we are not asking for ’special rights’, which is just code language for discrimination anyway. We are working to give our children an equal chance at achieving their potential as any other child. When discussions turn toward whether a child is ‘deserving’ of such help, all children suffer, and we sink toward a moral bankruptcy that they will inherit from us.
Be aware that our children are not broken, damaged, or lost.
Be aware that the words we use matter.
Be aware that you are talking about our children – my children. And be aware that many of them take those words literally and personally.
Be aware that we may sound angry, but that’s because we are fighting for our children, and we fight this battle for them every day.
Be aware that anyone with a soul would fight for these things for their own child if they were in our shoes.
Be aware that all we want is for our children to have a chance to be who they were born to be – just like anyone else does for their own kids.
Be aware that there are a multitude of autistic adults trying to live out their dreams and aspirations. It’s not just about children; adults need services and support too.
Be aware that we are often very tired.
Be aware that we expect great things from our children, and they often humble us with how far they exceed all expectations.
Be aware that we will never give up fighting for them.
And be aware that I still wouldn’t trade my life for anything.
BY: BOTH HANDS AND A FLASHLIGHT
Autistic people do not judge, do not play mind games, do not lie. Maybe we can learn some things from them.
Dominick now has a Speech Therapist, Heather, who he sees on Wednesday and Friday mornings for 30 minute sessions. He sees an Occupational Therapist, Anissa, on Monday for an hour session. Ashley, our in home therapist from the Easter Seals, still comes on Wednesday for an hour to work with us. The ST and OT is less than a half mile away. Tega Cay Speaks. I should really start playing the lottery more often considering how very lucky we have been with lining up all his therapy. Ashley is such a blessing. Without her I would be sooooooo lost.
Dominick has been making such tremendous progress. Everyone working with him is amazed by his progress. I keep a daily journal of some of his accomplishments.
March 1: Speech Therapy, Dominick went into the gym area and got a sucker, he remembered where they were. He took it into the speech room and brought it to me and said, “Open” “I want sucker”. Both Heather and I were stunned.
March 3: Woke up with Dominick in my bed saying, “I wuve you!” “I pee pee” “Pee pee Potty” I took him to his potty and after a few minutes I almost gave up thinking it was too good to be true. Then the potty started to sing the potty song (Once you go to the bathroom it has a temp sensor on it so it will sing) I think it scared him like he had done something wrong. I reassured him it was okay to go potty.
March 7: Dominick took bubbles to Shannon and said, “Open”
March 8: Dominick participated in about half of the activities at Gymboree. He did sing the bubble song and remembered the actions and movements that go with the song. He has not heard it in over 6 months. He made eye contact with several children and tried to talk to two different children.
March 10: Dominick woke up, walked into living room, picked up my water bottle, drank from it and said, “It is so good, Nummy!” While watching a DVD, I put Dominick on his potty in front of TV and gave him my water bottle. He all the sudden while watching the DVD said, “Oh look.” “ A drum.”
March 14: Bought Dominick a new bath toy. When I showed it to him he asked, “What is that?” With perfect diction!
March 16: Dominick is not feeling well. Very cranky today. Not wanting to make any decisions. Not wanting to participate in any activities or answer any questions. Had to cancel hearing evaluation.
March 18: Dominick is now using, “Stop it” and “No” more. It is exciting that he can now communicate to me when he doesn’t like something.
March 22: We got to OT before Anissa. When she got there Dominick looked at her started to walk into gym room and said to her, “Come On, Let’s Go”. The psychologist opened the door to the gym and I heard Dominick say, “Hello”. Everyone was just laughing at Dominick while watching him in the gym. He is such a HAM today.
March 23: Dominick and I went to swim class. Dominick will not blow bubbles in the water. He did great kicking. He was able to climb out of the pool by himself. Put him in the daycare at the gym. He did just fine. After story time today, just before his nap, he sat up and with each hand he pretended like they were puppets and had them talking to each other. Right hand: Hello Left hand: Hello Right hand: How are you? Left hand: I am fine. How are you? And on and on. It was HILLARIOUS!
March 24: Heather, the speech therapist, did a mini evaluation on Dominick today. She said she is starting to run out of material for him. Says he is progressing much faster than anticipated. Ashley and I worked on getting him to ask for objects by using more descriptions such as color. Ashley says he is doing so great because of all the work I am doing for him. “Patting myself on the back!”
March 26: Dominick is saying, “Mommy” “There’s Mommy” “Hi Mommy” “I Wuve You Mommy”, every day several times a day!
March 28: Went to Hailey’s. Dominick and Kaitlin played together. They tossed the ball back and forth. He even tried to communicate with her. He cried when it was time to leave. Went over to Marcella’s house. He showed off! Dancing and talking. MR. PERSONALITY! Dominick has started saying “Thank you” and “Thanks”.
March 29: According to Anissa Dominick is an “A Type” personality. Meaning he will be very detailed and a great organizer. He is going to be a perfectionist. There is a little girl, Ashlyn, around 10 years old who sees Anissa after Dominick. She is severely autistic. She does not hug her parents and rarely talks or looks at people. Last week she took her nurses glasses and put them on me. She looked me right in the eye. She has tremors and bad ticks. They stopped when she was looking me in the eye. I told her thank you and she got excited and clapped. Then I asked her for “High 5” and she gave me two “High 5’s”. This week when Dominick came out of the gym with Anissa, Ashlyn looked at Dominick and said, “My baby”. She saw he had a monkey on his shirt and she said, “My Monkey”. She touched his shirt and grabbed his hand. They sat in the chairs beside each other. Dominick would look at her and she would look at him too. Dominick tried to talk to her in his Gibber Gabber. They just sat there and held each other’s hand. I am blown away by the connection Dominick and I have both made with her. So is Anissa.
April 1: Went swimming with Shannon and Sage. Sage swam up to Dominick and me. He grabbed Dominick’s arm. Dominick said, “Sage! GO AWAY!” He then tried to either push or punch at Sage. This is great progress! Not excited about him wanting to try to harm Sage but excited because Dominick is trying to communicate more about what he likes and dislikes.
April 4: Easter Egg hunt! While watching TV, Dominick started copying the Progressive Insurance commercial. He knew practically all the words and even used dramatic expressions. I truly believe he has photographic memory. I got video of it. Hilarious. Dominick is dancing to Kyle’s radio show. So cute. Loves dancing with his Mommy!
April 7: Ashley is back from vacation. Yay! Dominick is not having a great, good or even okay day. Not wanting to participate. Regressing and going into his little world again. Doing some of his repetitive behaviors and sounds. We are going to have bad days. They SUCK!
So now you are caught up with Dominick. Now for me! I still have days when I feel like “SUPER MOM”. Able to clean the dirtiest of diapers in a single swipe, able to clean all and organize all and do all and be all and blah blah blah…
Then there are the days when I can’t do anything right. I can’t get task completed. I have 5 million tasks to get done. I am not doing enough to help my son. I am the crappiest wife in the world. I am an awful daughter and sister and friend and mother. I miss my daughter Hailey and I am not doing enough for her. I can’t return phone calls to anyone. I can’t even check my email.
It can take its toll out on you. I need an extra 5 hours in the day! I need a clone. I get no sleep usually. I miss being able to have insomnia and getting stuff done while everyone else sleeps. I have learned I have to make time for me. I have to take care of me! If I don’t I will be no good to Dominick. I also have learned that I need to ask for help. I can’t do this alone.
All of this can add a whole lot of strain to a marriage. There is just not enough time in the day. You have to make time to spend with each other. We had to make time to do something with each other that doesn’t involve ASD or Dominick. Marty and I are taking Shag dance lessons. We get to have a date on Friday nights. We get to go out and laugh. I usually only get to see him 2 maybe 3 nights a week. The second he gets home from work on Wednesday and Thursday I walk out the door. I work on some Friday and all Saturday nights. On Sunday I am so exhausted I don’t want to do anything. Communication is usually only a few words on the phone. All of this can make me feel alone in this sometimes. We are getting through it all! It just takes work!
My dad is the greatest!!! He calls me daily to ask me questions, get updates about Dominick, tell me about something new he heard about ASD, mails me articles from the paper, comes to Dominick’s therapy sessions and on and on and on. I am so proud of him. He told me he just wants to be able to talk to his grandson. He wants to know how to communicate with him and understand what it is like for Dominick. WOW!
On April 1 I put blue string lights up at Lynn’s for Autism Awareness month. Bill and Kitten allowed me to tell everyone there about my story and about ASD. I have been blown away from the stories others have of their own experiences with Autism. Their children, grandchildren, nieces, nephews and friends. I had no idea it has touched so many of these people I see every week. So many people came up to me after to give me a hug, a word of thanks because they had no idea how big of a crisis it has become, to tell me about their loved one, a word of encouragement and a whole lot of praise for being a wonderful mom. All of these people from Lynn’s are such a big part of my life. I see them every week. They make me smile and laugh every day I see them. We tell each other jokes and stories. I have become so attached to them all. I look forward to seeing them. I love them and they are in my heart always.
I have some items to sale for Autism Awareness. Car and fridge magnets, pins, decals, bracelets and key and card chains. Crickett has been helping me sell them at Lynn’s. She is such a sweet heart. If anyone would like to purchase anything please contact me. Or if you would just like to make a donation I can help point you in the right direction. The family-run MOSI Foundation will match your contribution up to $1000.00 for a limited time. This is who I plan on making my contribution to. With you help we will be able to fund more research for these amazing kids.
I want to post someone else’s blog post which sums up everything I want you all to know about Autism Awareness, me and my amazing, funny, brilliant son Dominick.
BE AWARE, BY: BOTH HANDS AND A FLASHLIGHT
Be aware that if you’ve met one autistic person, you’ve met one autistic person.
Be aware that just because people don’t talk doesn’t mean they can’t communicate. And it certainly doesn’t mean they aren’t intelligent.
Be aware that sometimes our kids can’t help it. They are trying, incredibly hard.
Be aware that an open mind and a closed mouth are sometimes the best response to a situation.
Be aware that our sons and daughters are awesome.
Be aware that we will kick the butts of anyone who says otherwise.
Be aware that many public figures and organizations talking about autism don’t necessarily speak for a whole lot of us.
Be aware that a lot of the people who talk the most also have the biggest agendas and the most to profit from.
Be aware that if a parent is trying to do something with a child who is melting down in public, pause a minute, postpone judgment, and reflect on whether that child and parent are facing challenges you do not understand.
Be aware that price gouging on materials and equipment infuriates us. We know some companies do it because we have to have what they sell.
But be aware that we are now a people’s movement, and the power is shifting to us. We will find new solutions, and they will be better because we made them. And we won’t mourn when unethical companies go out of business.
Be aware that we are loyal and faithful to those who support us and unforgiving in our pursuits against those who take advantage of our children and us. And we have very, very long memories.
Be aware that we tend to be very fired up about our children and their needs, and we aren’t sorry about it.
Be aware that if anyone messes with one child, they mess with all of us.
Be aware that we are unapologetic about getting funding for special education, disability services, or other supports. If people want to argue against these programs, that’s their right. But be aware that if anyone says our kids aren’t ‘worth it’, rather than debate them on the merits or lack thereof, we’ll just tell them to go to hell.
Be aware that we are not asking for ’special rights’, which is just code language for discrimination anyway. We are working to give our children an equal chance at achieving their potential as any other child. When discussions turn toward whether a child is ‘deserving’ of such help, all children suffer, and we sink toward a moral bankruptcy that they will inherit from us.
Be aware that our children are not broken, damaged, or lost.
Be aware that the words we use matter.
Be aware that you are talking about our children – my children. And be aware that many of them take those words literally and personally.
Be aware that we may sound angry, but that’s because we are fighting for our children, and we fight this battle for them every day.
Be aware that anyone with a soul would fight for these things for their own child if they were in our shoes.
Be aware that all we want is for our children to have a chance to be who they were born to be – just like anyone else does for their own kids.
Be aware that there are a multitude of autistic adults trying to live out their dreams and aspirations. It’s not just about children; adults need services and support too.
Be aware that we are often very tired.
Be aware that we expect great things from our children, and they often humble us with how far they exceed all expectations.
Be aware that we will never give up fighting for them.
And be aware that I still wouldn’t trade my life for anything.
BY: BOTH HANDS AND A FLASHLIGHT
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