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