advokids

It is all over the news, the debt ceiling must be raised and President Obama is trying to get cooperation from the Republican leadership.  Once again, however, he has indicated a willingness to put individuals with disabilities lives at risk.  Medicaid is the lifeline for those who cannot care for themselves and continued cuts to vulnerable groups–the disabled and the elderly in particular, will put lives at risk.
Enormous Medicaid cuts are being discussed in Washington.  We have an unusual opportunity to be heard, particularly in New York and particularly with Senator Charles Schumer.  I made the calls to Senator Schumer and actually spoke to a live person for about four minutes.  She listened to me and asked some questions.  It was very refreshing to have your US Senator seem to care about what I had to say about Medicaid and the devastating impact these cuts would have on my daughter Lauren’s life and the lives of everyone with disabilities.

I also spoke to a real person at both Senator Gillibrand and Congressman Steve Israel’s office.  They too seemed to be interested in what I had to say.
So call 202-224-3121 (main Capitol switchboard) to connect with Senators Schumer, Gillibrand and your Congressperson.

Tell whoever answers who you represent, your story and how devastating cuts to Medicaid would be for persons with developmental disabilities.

You may only get the typical 30 second, as opposed to the 3 minute, treatment, but no matter, with the talks of deep cuts in programs for our loved ones, we each have to try.

On July 13, 2010 Governor Patterson signed a bill that changed the name of the Office of Mental Retardation and Developmental Disabilities to the Office of People with Developmental Disabilities, thus removing the “R” word from the office name.

There is a very dangerous provision creeping into S. 2860, the Preventing Harmful Restraint and Seclusion in Schools Act, which would permit school staff to include restraint/seclusion in a child’s IEP or Sec. 504 plan.  The present proposal (Sec. 5(a)(4) prohibits including restraint/seclusion in an IEP as a planned intervention.  The provision should not be changed.  According to the Autsim National Committee, evidence shows that when student plans contain provision for restraint/seclusion, staff use them as a first resort, not as a last resort.  Neither restraint nor exclusion provide any educational benefit and, therefor, do not belong in an IEP.

Call your Senator and Congressman and voice your opposition to the proposed changes.  Below is the full alert from the Autism National Committee:

week, as the Senate drafts its final version of the Preventing Harmful Restraint
and Seclusion in Schools Act, S. 2860, a very dangerous provision is creeping in.  The Senate would let school staff put restraint/seclusion in a child’s IEP or 504 plan.  Call your Senators now and ask them to reject this proposal. See Instructions Below on How To Contact Congress.

Senators: Please Do Not Allow Restraint/Seclusion to be Added to the IEP in S.2860.  Currently, in both House and Senate bills, Sec. 5(a)(4) forbids including restraint/seclusion in an IEP as a planned intervention.  The Senate should not change it. Evidence shows that when student plans contain restraint/seclusion, staff use them as a first resort, not last resort.  Restraint/Seclusion provide no educational benefit; instead, they kill, injure, and traumatize.  They do not belong in IEPs.

Senators:  S. 2860 should require that all students receive IEPs which treat them with dignity, with positive interventions, and appropriate services.  These are the techniques that prevent dangerous behavior.  They help deescalate hot situations and prevent them from arising.  Those in Congress who say they don’t work are wrong. 70% of the parents surveyed in Unsafe in the Schoolhouse<http://www.copaa.org/pdf/UnsafeCOPAAMay_27_2009.pdf> (J. Butler, COPAA, 2009) reported that their children received only restraint and seclusion–not positive interventions.  The planned Senate bill, while supporting school-wide positive interventions, wouldn’t require positive interventions in individual student plans, but it would permit restraint/seclusion instead.

Senators: The Proposed Amendment to S. 2860 Will Take Away IDEA Rights.  Unlike IDEA, 504, and ADA, the Restraint/Seclusion bill has been written to prevent parents from seeking to enforce it in with lawsuits.  It is like NCLB and FERPA. By adding a provision permitting restraint/seclusion in IEPs, the bill may be used to prevent parents from challenging those IEPs under the IDEA.   This appears to be inadvertent, but it would have a major impact on exercising IDEA rights!  The new law (S2860) would take precedence over the old law (IDEA).

Parents might be unable to invoke stay put to stop the new IEP; to demand that it not be implemented without their consent; to seek an IEE to challenge elements of it; and to go to mediation and due process to fight it.  This will occur unless the Senate puts in language to protect those IDEA IEP rights.

The Senate bill would not require fully informed consent from parents before IEPs include restraint/seclusion.  The amendment wouldn’t require giving out a notice of procedural safeguards.  The Senate bill has no requirement that the IEP team consider medical and psychological contraindications to r/s (e.g., no pressure to a child with brittle bones or chronic pain; sensory issues for children with autism; avoiding physical restraint for an abuse victim).

Putting R/S in an IEP Is NOT necessary to plan for crises.  Some Senators claim that restraint/seclusion should be in an IEPs when a person is in danger of injury and the student has a history of injuring others.  They may tell you this when you call them.  But the current bills always allow restraint/seclusion to be used when someone is in danger of injury (Sec 5(a)(2).  Adding it to the IEP isn’t needed to make this effective.  Nor is it needed to plan for violent students, a claim made by the amendments supporters.  Students who continue to be aggressive need strong positive interventions and solid de-escalation techniques.

The bills already allow schools to undertake school-wide and other safety plans that aren’t specific to an individual child (Sec. 4).  These will take care of crisis planning needs (e.g. “If  a teacher cannot safely move a large child into the seclusion room, Mr. X should be called.”)  And certainly nothing in the bill stops staff from talking about what they would do in an emergency.  Nor is the IEP IEP provision needed to simply add protections for children to IEPs (e.g., permit a nonverbal child access to assistive technology).  The current bill only forbids adding restraint/seclusion as a “planned intervention.” It doesn’t prevent anyone from adding protections to an IEP.

Senators: Schools have the upper-hand in IEP negotiations; parents rarely are equals.  Some Senators think that IEP meetings are even-sided negotiations and parents who oppose restraint/seclusion could simply say no.  They need to hear from you about how one-sided IEP meetings are.  Every person reading this has stories about how unequal IEP meetings are; the Senate needs to hear those.  Even if the Senate requires informed consent, parental consent is often coerced and parents are not aware of their rights, or fully informed of the dangers.

PLEASE CALL THE SENATE NOW.  If you want to impact the amendments being written, now is the time to be heard!  The Senate is drafting the amendments now.  The professional lobbyists for school districts are making themselves heard.  Why not you?

INSTRUCTIONS FOR CALLING YOUR SENATORS:

– Always use the bill number, S. 2860, Preventing Harmful Restraint and Seclusion in Schools Act.  Please call; Senators pay more attention to calls.  Email may get lost.  Use Email only if you must.

– Dial 202-224-3121 (TTY 202-225-1904) or go to www.senate.gov<http://www.senate.gov>, click on Senators for contact information (including local numbers).  You will have 2 Senators.  When you call, ask for their Education or Disability Aide.  Leave a detailed voicemail message if they are not available.  Be sure to identify the bill by name, Preventing Harmful Restraint and Seclusion in Schools Act and use the number, S. 2860.

Please call your Senators–but especially if you live in these states on the Senate HELP Committee: AK, AZ,  CO,  CT,  GA,  IA,  KS ,  MD,  MN,  NC,  NH,  NM,  OH,  OK,  OR,  PA,  RI,  TN,  UT,  VT,  WA,  WY.  If you are in these states, check the HELP Committee website so you call the Senator on the Committee, http://help.senate.gov/.  If you have friends or family in the Committee states, please get them to call.  And even if you are not in a Committee state, please call.  Senators from all over the country are impacting this bill.

– Call Senator Tom Harkin and ask for his disability counsel (phone 202-224-3254, fax 202-224-9369).  Senator Harkn chairs the Senate Health, Education, Labor and Pensions Committee, http://help.senate.gov/ and has much power over this bill.  He needs to hear from parents and advocates from around the country; he certainly is hearing from the other side.

Please feel free to distribute and share this alert as long as you include my signature block below in full.

Thanks,
Jess Butler

As the mother of a child with autism, Jess is currently Congressional Affairs Coordinator for the Autism National Committee (www.autcom.org<http://www.autcom.org>) which has worked to promote civil rights for people with autism for two decades.  She previously was Chair of the Board of the Council of Parent Attorneys and Advocates, and cochaired its Congressional Affairs efforts from 2004-09, authoring Unsafe in the Schoolhouse, Abuse of Children with Disabilities<http://www.copaa.org/pdf/UnsafeCOPAAMay_27_2009.pdf>(COPAA 2009).  This alert is a personal statement by Jess and reflects her views.

The issues faced by families during a divorce become more complicated when there is a child with special needs.  The fundamental issues remain the same:  Who will take care of the disabled child?  How will the  quality of life for the disabled child be preserved?

Major issues revolve around visitation, custody, guardianship, child support, medical insurance coverage, planning for the special needs child’s future and special education. The key issues are:

1.  Visitation must take into account scheduling of therapy and tutoring.  Speech therapy, counseling, ABA therapy (for children with autism), physical therapy, occupational therapy and tutoring are vitally important for children with special needs.  Because finding a therapist/tutor can be very difficult, it is often impossible to schedule sessions around the traditional visitation schedule.  Parents must be flexible in their visitation schedules to accommodate the child’s need for such therapy.

2.  Children with intellectual disabilities will often need a guardian upon attaining the age of 18.  In fact, many organizations that provide adult services are now requiring guardianship as a condition to participation in some of the adult programs, particularly residential programs.  It is helpful for the parents to include an agreement as to who will become the primary legal guardian upon the child reaching age 18.

3.  Because many children with special needs are medically involved, medical insurance is vitally important.  Many, if not most, insurance policies today will continue to cover a child with disabilities under the parent’s policy if the onset of the disability was prior to age 22 and substantiation from a physician is provided. Therefore it is vitally important that the medical insurance policies of both parents are reviewed and the parent with the  policy offering such coverage continues the coverage.

4.  Many children with disabilities become eligible for government benefits (SSI and Medicaid) upon turning 18.  These benefits are minimal in the financial sense (SSI provides approximately $400-$600 per month and most doctors do not take Medicaid patients).  Medicaid does, however, provide the funding for adult programs under the Medicaid Waiver program and it is very important for persons with special needs to qualify for Medicaid.  Therefore, parents must plan for the fact that the special needs child can have no more than $2000 in assets.  A special or supplemental needs trust can provide for the child’s future without affecting eligibility for government benefits.

5. Visitation must take into account the specific needs of the disabled child.  If a child is bedridden or needs 24 hour care from an aide or a nurse or has other special needs, it may not be feasible for the child to move from place to place.  The only way that both parents may be able to spend time with the child is for the parents to move devise a schedule for the parents to move from place to place.

6.  Custody is a very sensitive issue in any divorce.  With a special needs child, however, it becomes more so because a decision maker is very important with respect to medical and special education issues.  Who has the time, temperament and willingness to see to the needs of the child on a daily basis?  Who is better able to make these decisions.

7.  Children with special needs can and frequently do, remain in the school system until they reach the age of 21.  Special education issues frequently arise in dealing with local school districts.  Who will work with the Committee on Special Education and advocate for the child?  Who will pay for any costs not paid for by the school district but that are out of the ordinary?

8.  Child support issues must be dealt with carefully.  If the special needs child is under the age of 18 and receiving Medicaid benefits child support must be structured in a way that does not affect Medicaid benefits.

9.  Because children with special needs frequently remain in school until age 21 and often are unable to support themselves, it is important that any settlement agreement or separation agreement take into account the fact that the child may need to be eligible for government benefits such as SSI and/or Medicaid. If there is more than one child then the child support must be allocated among the children and the child with disabilities share ordered into a supplemental needs trust to insure eligibility for government benefits.

10. Frequently parents do not agree on the resolution of these issues. It is important to set up a mechanism to provide for mediating these issues in a timely manner.  Including a mediation clause can prove very helpful