advokids

THE CONGRESSIONAL DEMOCRATIC LEADERSHIP AIMS TO HAVE THE CHIP BILL ON THE FLOOR THIS TUESDAY -We want our rehab reg. moratorium included

MAKE YOUR PHONE CALLS NOW/ASAP, AS MANY AS POSSIBLE. URGE SENATORS CLINTON AND SCHUMER TO INCLUDE THE MORATORIUM ON CMS PROPOSED REHABILITATION REGULATIONS (ELIMINATING MEDICAID FOR HABILITATION SERVICES) IN THE SENATE VERSION OF CHIP (Children?s Health Insurance Program) REAUTHORIZATION - S. 1893.

Tell them: “The House bill (HR 3162) to reauthorize the Children?s Health Insurance Program (CHIP) includes a moratorium to stop regulations proposed by the Bush Administration which eliminate federal Medicaid for habilitation services. These regulations would be devastating to many individuals with mental retardation and other developmental disabilities served in New York State. Therefore, we strongly support the moratorium.

Unfortunately, the Senate’s version of CHIP reauthorization (S. 1893) does not include the moratorium on these regulations.

Please fight for inclusion of the moratorium in the Senate bill . Protect the needs of our most vulnerable citizens. ”

REMEMBER: PROPOSED CMS REGULATIONS WILL STOP MEDICAID FUNDING FOR HABILITATION SERVICES RENDERED OUTSIDE OF HCBS WAIVER PROGRAMS AND ICFs if they are implemented as scheduled in January.

CMS has published regulations (42 CFR Parts 440 and 441, published August 13, page 45201) which, if finalized, will deny federal Medicaid for Day Treatment, Article 16 Clinics and long term developmental disabilities habilitative therapies in Article 28 clinics. The regulations will badly undermine the ability to provide medical and dental in clinics, given fixed pricing methodologies. Habilitation services include, ie, OT, PT, Speech, Psychological, Rehabilitation counseling.

Contact Information:

Senators Clinton and Schumer can be reached through the Capitol Switchboard at 1-800-828-0498

Senator Clinton’s direct line is 1-202-224-4451
For additional Clinton contact info, including regional office contact numbers and email, see

http://clinton.senate.gov/contact/

Senator Schumer’s direct line is 1-202-224-6542
For additional Schumer contact info, including regional office contact numbers and email, see

http://schumer.senate.gov/SchumerWebsite/contact/contact.html

(Note: I use the term “mental retardation” in the message above because it is politically potent, gets the point across quickly and this is an emergency situation.)

Thank you to Ben Golden of NYSARC for providing this information. This is the first attempt to make inroads on services to those with intellectual disabilities. We cannot let it pass.

Governor Elliot Spitzer signed the Burden of Proof legislation on August 15 thus showing his continued support for children with disabilities and their families. This legislation was vigorously opposed by the New York State School Boards Association and the NYS Department of Education among others. A grass roots movement by NYS advocates resulted in thousands of you calling the Governor’s office urging him to sign the Burden of Proof bill. Special thanks goes to Ben Golden of NYSARC whose outstanding efforts in shepherding this bill through the NYS legislature for two successive years has finally met success.

We also thank Assemblywoman Catherine Nolan and Senator Andrew J. Lanza for sponsoring the bill and working so hard for its passage. The legislation places the burden of proof in special education impartial hearings on school districts except in the limited circumstance where parents have unilaterally placed their child in a private school. New York law from 1975 to 2005 held that the burden of proof was on the school districts. In 2005 the U.S. Supreme Court held in the Schafer v. Wiest that the burden of proof should be born by the party objecting to the individualized education plan (IEP), which was usually the parent, in states that had no statute allocating the burden of proof. The legislation signed by Governor Spitzer preserves New York practice prior to the Schafer case and levels the playing field by requiring school districts to justify their positions regarding student placement and services.
You can read Governor Spitzer’s press release at http://www.ny.gov/governor/press/0816073.html

On September 22, 2006, the First Appellate Division affirmed a lower court ruling by New York County Surrogate Eve Preminger upholding the constitutionality of the Health Care Decisions Act in The Matter of Chantel R. New York State’s Mental Hygiene Legal Service (MHLS) argued that the Act was unconstitutional because it violated the Equal Protection clause of the U.S. Constitution by treating persons with mental retardation differently than people without mental retardation in regard to health care decision making. The issue arose during a proceeding to appoint Chantel R.’s mother as guardian. When asked how she would regard a decision by her mother to withhold life sustaining treatment, Chantel appeared to object to the hypothetical question. MHLS then insisted that her mother be precluded from making such decisions. New York Surrogate Eve Preminger held a hearing and heard evidence in this case which substantiated that Chantel was unable to make health care decisions herself. MHLS appealed to the Appellate Division.

The Court stated that “The Surrogate properly concluded that a person with mental retardation’s expression of a desire to continue life-sustaining measures is categorically distinguishable from the same desire expressed by a mentally competent individual because only the latter has the capacity to appreciate the consequences of the decision.” The Court recognized that a person with mental retardation has never had the capacity to make these decisions and understand the consequences of such decisions. To go back to the days before the Health Care Decisions Act, when there was no one to make end of life decisions for persons with mental retardation, would be condemning them to unnecessary suffering as was illustrated in the Pouliot case–a case credited with spurring the passage of the Act. In that case, Sheila Pouliot, a severely mentally retarded person, became terminally ill and, in spite of the fact that her doctors felt it was futile and her sister and the ethics board of the treating hospital objected, she was kept alive for several weeks. It is alleged that she was in pain and suffered. This is the situation that must be avoided.

It is unknown whether or not NY MHLS will appeal the Appellate Division decision. For the sake of all individuals with mental retardation and/or developmental disabilities in New York State I hope they do not. The fact that one has a developmental disability should not deny such individual the right to have an advocate, in this case a court appointed 17A Guardian, to provide the same rights to a death with dignity and without pain as you and I.

The Court held “that any disparity in treatment of a mentally retarded person is justified by legitimate state interests, that respondent has been accorded due process and is not aggrieved on such grounds and that the asserted vagueness of any statutory provision with respect to the withholding or withdrawal of medical treatment is not before us. Therefore, we affirm the ruling in all respects.”

On June 22, 2006 the New York State Legislature passed S.8354, legislation that placed the burden of proof in special education impartial hearings on the school district, thus maintaining the status quo in New York State for the last 30 years. The legislation was passed in response to the Schaeffer v. Weast case decided by the U.S. Supreme Court last year (see prior posts). In spite of wide spread support not only from parents of children with disabilities but numerous other groups, including the teachers unions, the Governor last week vetoed Senate bill 8354. The veto message was full of misinformation and misrepresentations.

Parents, advocates and others concerned about the rights of children with disabilities to obtain special education services must contact their State Assemblymen and Senators as well as the Governor to let them know that the Governor’s veto is unacceptable.

EXPRESS YOUR OUTRAGE TO YOUR STATE LEGISLATORS IT IS CRITICAL NOT TO LET THE VETO OF S.8354, REGARDING THE BURDEN OF PROOF, PASS QUIETLY, AS IF NO ONE CARES.

TELL YOUR STATE LEGISLATORS THAT THE GOVERNOR?S VETO OF SENATE 8354 IS TOTALLY UNACCEPTABLE.

TELL THEM THAT YOU EXPECT THEM TO OVERRIDE THE VETO OF SENATE 8354 WHEN THEY RETURN FOR SPECIAL SESSION IN SEPTEMBER. Let them know that the veto is unacceptable.

THE LEGISLATURE CAN OVERRIDE THAT VETO BY A TWO THIRDS VOTE IN EACH HOUSE. THAT SHOULD NOT BE DIFFICULT SINCE THE BILL WAS APPROVED BY A 100% VOTE IN THE SENATE AND A 95% VOTE IN THE ASSEMBLY.

The failure of the Governor to sign this legislation puts the rights of children with disabilities to a free and public education in the least restrictive environment addressed to their individual needs at risk. Without this bill, the right to an appropriate public education for students with disabilities, will belong only to those whose parents can pay for it by hiring expensive legal help. You can contact your New York State legislator at:

New York State Assembly

Senate: http://www.senate.state.ny.us/sdlookup.nsf/Public_search?OpenForm
Just enter your zip code and up will pop the correct information.

For parents of children with disabilities the scheduling of an IEP meeting is fraught with trauma and anxiety. This annual meeting will determine whether a disabled child?s needs will be successfully met for the next year–or so we fear.

As parents we have a unique perspective on the progress and needs of our child. In order to prepare for the meeting, we must have an idea of what is to take place. Under the law, the IEP meeting is intended to (i) determine the present level of the child?s academic achievement and functional performance in the context of the child?s unique needs, (ii) develop a plan to to meet the child?s unique needs for the coming academic year, and (iii) to establish goals so that the child makes continuous progress over the coming year. Remember that none of this is written in stone and the IEP can be amended during the course of the year. A meeting can be requested at any time.

In preparing for an IEP (Individual Educational Plan) meeting:

1. Review existing and prior IEPs and evaluate if progress has been made. Have the goals set forth been met and have they provided for a high enough level of achievement for my child.

2. Review any recent or new evaluations and try to determine if new evaluations are necessary based on the circumstances faced by my child during the past year.

3. Review the child?s present level of performance. Has there been a measurable improvement in performance? Have goals been met? Are they realistic?

4. Where do I see my child in one year, three years, five years. You cannot create a plan and/or SMART (specific, measurable, action words, realistic/relevant and time limited), goals if you have no idea where you want to go and what is realistic for your child.

5. Remember the purpose of the IDEA is to provide a free and appropriate public education in the least restrictive environment to a disabled child that addresses the unique needs of the child with the purpose of preparing the child for further education, independent living and employment.

You may find that you need to use an educational consultant or independent evaluator who can provide you with insight and recommendations concerning your child?s needs and methods of addressing those needs. IDEA 2004 focuses on scientifically based methodologies. Consultants can assist you in learning about various teaching methods that may or may not work with your child. A comprehensive evaluation by an evaluator who is an expert or particularly experienced with your child?s disability will be able to provide insight and data, facts, to support their recommendations. This data will provide the support you need for assistance you are seeking for your child.

Once you prepared for the meeting, you will be better able to advocate for your child.

On March 23, 2006 the New York State Court of Appeals released its ruling that upheld the Health Care Decision Act granting 17a Guardians the right to make end of life decisions for people with mental retardation irrespective of the date that the 17A Guardian was appointed. This is a very important decision for those of us who are 17A guardians. Section 17A of the Surrogate Court Procedure Act establishes a simplified procedure for the appointment of a guardian for individuals with mental retardation and other developmental disabilities. For many years a guardian had to ask for the right to make medical and dental decisions and insure that the right to make those decisions was included in the decree and the Letters of Guardianship. However, the right to make medical and dental decisions did not include the right to make end of life decisions.

Brown v. Board of Education ended segregation by rejecting the concept of separate but equal education in 1954. The IDEA guaranteed a free and public education to every child with a disability in 1975–twenty years after Brown. Schaffer v. Weast, decided in 2005, is chipping away at the guarantee of a free education to children with disabilities. Make no mistake, the civil rights movement waged by individuals with disabilities continues.

Unfortunately, the Schaffer case is a step backward in the fight for a free and appropriate education addressing the needs of the disabled child. Even with the burden of proof in IDEA hearings on school districts, parents find it difficult enough to get a free and appropriate education for their disabled child. Now is the time for each state to pass legislation placing the burden of proof where it belongs–on the school district. Now is the time for parents and advocates to contact their state legislators and demand that the guarantees of the IDEA be protected by placing the burden of proof where it belongs–on the school district.

The reasons have been hashed and rehashed (see previous posts). Today I urge each and everyone who reads this post to contact their state legislator and urge them, no, demand that they pass legislation placing the burden of proof back on the school district.

In New York the push is on. Parents and parent advocates are urging legislators to pass legislation to maintain the status quo–to keep the burden of proof on the school districts, where it has been for the last 30 years under New York law. The IDEA Compliance Act expires June 30. This is a perfect opportunity for the legislature to act by adding language that will maintaining New York’s position that the burden of proof belongs on the school district. In the alternative, new legislation can be introduced to place the burden on the school district, again, to maintain existing law. The only way this will occur is if parents and advocates make their voices heard.

This is a very important issue. VESID and several LI school districts have already issued memos on the shift in the burden of proof under Schaffer. School district officials have stated that Schaffer will reduce costs by reducing litigation because parents will think twice before asking for an impartial hearing. In fact, several have begun to tell preschool evaluators not to share recommendations for services with parents so that the district can solely determine the services to offer. Obviously this approach is intended to leave the parents in the dark about services their children may need.

I am working with other advocates to garner support among the Long Island, New York State delegation. I am arranging meetings with members of the Long Island delegation to explain how important this issue is, that the failure to place the burden on the school district will mean that only those with financial means who can afford an attorney to represent them and to fund the greater requirements of litigation will be able to insure that their children will receive the guarantees of the IDEA. If you want to participate in this effort please contact me at smg@smgesq.com.

I also urge anyone in NY State and elsewhere to contact their state legislators to support legislation to place the burden on the school districts. We are only trying to maintain the law as it has existed in NY for the last 30 years. Remember, Brown v. Board of Ed was in the 1950s, our children did not have the right to a free and public education until the 1970s. Let?s make sure that the right to an education continues to be an effective one.

Some of you may remember my post several months ago “I don’t want to live here any more” discussing my daughter’s desire to live in a community residence. Well, on Monday, February 6, Lauren’s dream came true. She moved into a community residence with 5 other women. She is excited and happy to be on her own.

I, of course, am experiencing severe separation anxiety. Is she okay? Is she taking her meds? Does she get to her day program on time? Although my husband and my 15 year old daughter are still here the house seems very quiet and empty. I keep telling myself that the move is as good for me as it obviously is for her–25% less laundry, 33% fewer meals to prepare, . . .

In spite of it all, we are all adjusting well. I just find sadness overcomes me at times. I know this will pass.

I know this is the best for Lauren and that is what is most important.

The Supreme Court decision in Schaefer v. Weist decided who bears the burden of proof in an administrative hearing assessing the appropriateess of an IEP.
In the decision, Justice O’Connor wrote: “If parents believe their child’s IEP is inappropriate, they may request an “impartial due process hearing.” ?1415(f). The Act is silent, however, as to which party bears the burden of persuasion at such a hearing. We hold that the burden lies, as it typically does, on the party seeking relief.” In most instances the party seeking relief is the parent.

The Court, however, limited its ruling to states that have no law placing burden of proof (Arizona, Arkansas, California, Florida, Hawaii, Idaho, Illinois, Iowa, Maine, Massachusetts, Missouri, Montana, Nebraska, Nevada, New Hampshire, New York, North Dakota, Oregon, Pennsylvania, Puerto Rico, Rhode Island, South Dakota, Vermont, Washington, and Wisconsin).

What does this mean? In the states that have no law on who bears the burden of proof, the burden of proof is now on the party seeking relief. There is no change in states that place the burden of proof on the moving party (Colorado, Indiana, Kansas, Louisiana, Maryland, Michigan, Mississippi, Oklahoma, New Mexico, North Carolina, Ohio, South Carolina, Tennessee, Texas, Utah. Virginia and Wyoming) and there is no change in states that place the burden of proof on school districts (Alabama, Alaska, Connecticut, Washington, D.C., Delaware, Georgia, Illinois, Kentucky, Minnesota and West Virginia.

What should parents do? The time has come for parents, parent organizations and advocates for the disabled to call upon state legislatures to introduce legislation to place the burden of proof on school districts.

Three years ago Lauren came home from her day program and announced that “I don’t want to live here any more!!!” I asked her what was wrong, I was aghast–what had we done to want her to leave??? After a while I realized that Lauren wanted to be like everyone else–all her friends lived in group homes, why should she live with us.

It is now three years later and Lauren is moving very soon. She is very excited. She tells everyone she comes in contact and with and has been packing her things for months.

It was a very hard decision to let her move. Lauren is medically involved although very independent. Who would take care of her and love her as we do. Then I began to think about it from a different perspective. I decided that I wanted Lauren to be happy and independent. I want to see her settled and with her “family.” I researched and chose the organization that I wanted to operate her house–Nassau AHRC. I looked at how houses were operated and maintained. I knew that I wanted to be sure that Lauren was in the right place and that I didn’t want her entire world to change all at once when something happened to me and Jeff, my husband. I didn’t want to place the burden of dealing with Lauren’s life on her sisters at the worst possible time–when Jeff and I could no longer take care of Lauren and our children had to deal with our disabilties as well as hers.

Lauren is now busy telling everyone her moving date. We are watching the house being renovated for her and her housemates and, yes, we are helping her pack and planning for her move. “I don’t want to live with you any more” still hurts, but it is the right time and move for Lauren. And, after all, what is best for her is really all I want.