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Advocacy Skip to:
DATE: February 28, 2006 Medical and IDEA News from NDSC and NDSS Additional Medicaid Cuts on the Horizon; You Can Help Save Community Services As discussed in the last Newsline, the recent passage of the Deficit Reduction Act (DRA) will significantly reduce federal funding for the Medicaid program. Medicaid is a federal/state program that pays for virtually ALL of the services received by adults with Down syndrome and many services for children. In addition, the President’s proposed budget for the next fiscal year (FY `07) reduces funding for Medicaid services even further. States, with the new added flexibility given to them by the DRA, may try to compensate for the cut in federal funds by imposing co-pays and premiums on beneficiaries. The next step is for the House and Senate to pass their budget resolutions. These budget resolutions are not law but are a blueprint for spending on discretionary programs, such as education and Medicaid. The appropriations committees then votes on spending bills that set the specific funding level. Without adequate funding, individuals with disabilities cannot receive the necessary support services to live in the community. Therefore, further cuts in Medicaid funding, as outlined in the President’s budget proposal, threatens the goals we have for our children -- to live in the community, earn real wages, and participate in community life. Joe is 22 years old and has Down syndrome. He lives in his own apartment with a friend who also has a disability. While both men enjoy independent living, they need support in the carrying out the tasks required for running a household; e.g., paying bills, developing a budget, dealing with utility companies; ensuring that household repairs are made, planning recreational activities, getting back and forth to their part-time jobs. To accomplish this, both men qualify for Medicaid-waiver funding which pays for a person to help with these day-to-day tasks. The cost to most parents to pay for these services would be prohibitive. Families need to let their legislators know how important Medicaid funding is to a productive independent life for their child. To accomplish this, there are many steps you can take. Develop a relationship with your state and federal legislators. Many legislators hold town meetings where the public has a chance to speak and ask questions. Attend these meetings or hold an event of your own. What Can You Do To Help?
This is an election year – candidates need votes to win elections and those votes come from you! NDSC and NDSS submit comments For the I.D.E.A. Multi-Year IEP and Paperwork Waiver demonstration programs. In I.D.E.A. 2004, provisions were included which authorized the Secretary of Education to fund projects in 15 states called the Multi-Year IEP and Paperwork Waiver demonstration programs. The premise on which these provisions were built was that teachers are overburdened with paperwork that does not lead to good outcomes for children. Unfortunately, to reduce this “burden,” instruction for students with disabilities may be compromised. For example, a three-year IEP can be offered which would result in less parental input and reduced accountability. In response from a request for the Department of Education to make recommendations on the design of these programs, National Down Syndrome Congress (NDSC) and the National Down Syndrome Society (NDSS) submitted joint comments and recommendations. The comments submitted are at the bottom of this Newsline. Supreme Court To Hear Another Special Education Case On January 6, 2006, the U. S. Supreme Court agreed to hear the case of Arlington Central School District v. Murphy. The Court will decide whether parents who win in special education cases may be reimbursed for the costs of their experts and/or educational consultants. This case could have a big impact for educational consultants, evaluators, advocates, and other individuals who assist parents during special education due process hearings. This case comes on the heels of another Supreme Court decision in Schaeffer v. Wiest in which the court decided that the burden of proof in a legal action is on the parents (e.g., parents must show that an IEP is inappropriate rather than the school district showing that the IEP is appropriate). To read more about the Arlington case, go to http://www.wrightslaw.com/news/06/arlington.murphy.htm NDSC and NDSS Comment On I.D.E.A. Pilot Projects Background The Paperwork Waiver Pilot allows up to 15 states to seek waivers of certain IDEA statutory and regulatory requirements for a period not to exceed 4 years. IDEA states that the purpose of this pilot is to reduce excessive paperwork and non-instructional time burdens that do not assist in improving educational and functional results for students with disabilities. The statute also mandates that procedural safeguards, civil rights requirements, and the right to a free appropriate public education (FAPE) may not be waived or affected. The Department appears to have exceeded its authority by expanding the scope of these pilots beyond the above statutory requirements. NDSC and NDSS Concerns The proposed requirements for the pilots threaten FAPE and could change the IEP and the IEP process forever. These pilots are of immediate concern for children with disabilities in up to 30 States. 15 States will be awarded the Multi-Year IEP Pilot and 15 States will be awarded the Paperwork Waiver Pilot. However, it is possible that some of the same States will apply for and be awarded both pilots. A long-term concern is that the pilots may become the basis for changes to IDEA that would affect all States. For example, during the next reauthorization of IDEA, the multi-year IEP might become a requirement, not just an option for parents to choose, and the civil rights protections could be permanently eroded. The proposed requirements for BOTH pilots would allow up to 30 States to create IEPs that differ in their content, development, review and revision from the annual IEPs you have been using. NDSS believes that this is a violation of FAPE, which requires a free appropriate education with special education and related services that are provided in conformity with the IEP requirements under IDEA. The proposed pilot requirements appear to go beyond what Congress intended when these pilots were added to IDEA. The report from the House of Representatives on IDEA 2004 clearly states that the usual IDEA rules for IEP development are intended to apply to multi-year IEPs. If Congress did not intend to waive the usual IEP rules for multi-year IEPs why would it be acceptable to change these statutory requirements for any other purpose? Another problem with the proposed requirements for both pilots is the vague language regarding the opportunity that parents will have to provide input into the their State’s pilot proposal and into the implementation and evaluation of the pilots. Parental input is critically important to ensure that long-term planning and paperwork reduction are not achieved at the expense of student outcomes and the informed involvement of parents in their child’s education. For example, in the Paperwork Waiver Pilot, who decides which tasks constitute a “non-instructional time burden that does not assist in improving educational and functional results for students with disabilities”? This phrase needs to be defined with parental input. It is important to remember that the short-term objective requirement for certain students with disabilities was eliminated in IDEA 2004 in the name of paperwork reduction. This decision raises concerns about where paperwork reduction might lead, in spite of the fact that procedural safeguards, civil rights requirements, and the right to FAPE are supposed to be kept in place. The proposed requirements for the Paperwork Waiver Pilot raise all the same issues as the Multi-Year IEP Pilot, plus some additional reasons for concern. IEP requirements AND other statutory, regulatory and State requirements are permitted to be waived according to the proposed requirements for the Paperwork Waiver Pilot. The standards for selecting these waivers are dangerously vague. Parental consent, which is required for a multi-year IEP, is not required for these other waivers. In addition to these critical flaws in the proposed requirements for the pilots, there is also a significant problem with the limited scrutiny provided by the proposed selection criteria that will be used by the Department to decide which States will be permitted to participate in each pilot. The proposed criteria must be amended to include more details and additional criteria must be included to address the many important considerations and protections that have been omitted. Resources The full text of the proposed requirements and selection criteria can be found at:
Media March 10, 2006 Fox TV bans the word 'retarded' from air LOS ANGELES, March 10 (UPI) -- Fox Broadcasting President Peter Ligouri has banned use of the word "retarded" in response to a complaint from a Down Syndrome advocacy group. http://www.upi.com/NewsTrack/view.php?StoryID=20060310-080908-5070r Regarding CBS "Two and a Half Men" Episode Entitled "Love Isn't Blind, It's Retarded" February 6, 2006 From The Arc of the United States: On Feb. 6th, CBS aired an episode of its “Two and a Half Men” show entitled “Love Isn’t Blind, It’s Retarded.” At the end of the episode, one of the main characters actually spoke that line. The Arc of the United States, alerted by a chapter to this incident, asked CBS to change the title of the episode and edit out the last line of the show so that it would not air in future re-runs. We also asked for an apology on behalf of our constituents. Over the weekend, CBS sent us this statement: “By nature, the Charlie character on Two and a Half Men is politically incorrect, emotionally dysfunctional, and often behaves immaturely. It should be understood that any comments he makes in the show are said within this context and is (sic) a reflection of his warped view of the world. It was not the intention of CBS, the series producers and actors to offend anyone with intellectual disabilities or their families with his callous remarks.” As you can see, this is entirely unacceptable. It does not contain an apology and it makes no commitment to fix the problem. CBS admits that the character’s remarks were callous, yet the statement seems to warn the disability community to expect further attacks in the future. The Arc encourages its chapters and members to let CBS know that this sort of hateful slur against our constituents is unacceptable. Below is a sample message that you may choose to e-mail to CBS at audsvcs@cbs.com : ATTN: Vice President of Programming I am contacting you to express my utter disgust after the airing of Two and a Half Men on February 6. The episode’s title, “Love Isn’t Blind, It’s Retarded,” is an outrageous affront to millions of Americans affected by intellectual disabilities as well as to their families. It’s clear that CBS, which has promoted itself as a family-friendly network, believes it’s appropriate and even humorous to poke fun at people with disabilities. I will urge my family and friends to join me in seeking out networks
that are truly sensitive to families and whose programs do not find humor
in ridiculing people with intellectual disabilities. |
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