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Thursday, February 22, 2007

continuum of alternative services

Here's an explanation as it relates to the federal law:

http://specialed.principals.org/discidea/searchregs/300subpartE/Esec300.551.htm and also look at http:///nichcy.org/idealist.htm

If you find the IEP to be ineffective and your child is not benefitting from being at school or if the school cannot provide the individualised special education according to your son or daughter's individual need, a school/parent can elect to an "continuum of alternative service" even if it's outside of the district. Other parents use it to "homeschool" their child.

If a parent finds a service that can fulfill their son or daughter's specific IEP goals that the school cannot, through "continuum of alternative service" the school must provide this by law.

This is why it is absolutely IMPERATIVE THAT PARENTS & CARE TAKERS GET THEIR DUCKS IN ROW before they walk into the IEP meeting. You must know every inch of your child' spectrum, disorder, medical issue, because the schools do not know. They are not medical experts. They are education experts. They have education and mainstream models. But you might have a child that does not fit into their "model" here and needs something else in the form of an individualized special education.

The issue right now is that schools have been "regulated" at the federal/state level serve all special populations of children so some schools can choose to give you a "drop dead no" even if you or an advocate find an alternative that is the exact match for your son or daughter's needs. Only when a parent can prove that the school is only meeting this regulation on paper, not in the delivery of the IEP, can a child be eligible for alternative services.

Keep in mind, federal and state "regulations" cannot meet every "individual" need so there is wiggle room. Parents have the right to due process. I've read discussions where parents have challenged their school district based on the IDEA federal law set up for these special exceptions, hence the term "individual" and they have had good results.

Some schools do an outstanding job offering mainstreaming opportunities, special education services, least restrictive environments, and fulfilling IEPs, and some do not. I have been in special education environments that met the individual needs of a child while also providing special education opportunities. On the other hand, I have seen (I kid you not) 18 kids sitting in one room with one teacher where half were zoning out doing absolutely nothing.

I had to prove my child would not benefit from the school's definition of "least restrictive environment" and all the other definitions, labels and acronyms they have (I'm trying to be funny here...) in order to secure services elsewhere. I actually learned how to do this from a homeschool book.

I asked the school "you mean I can take my child out of school to be "homeschooled" and you would call it "services" but I can't put him into this special school where he can receive these same "services" as home?"

Hmmmmmm.

In Hamilton Co. Tennessee, a family sued the school because they wanted their son to attend this special program specifically for Autism. The schools said "no way." I think the parents won but it went into appeal... If you visit the FAPEPAGE and Wrightslaw they list the court cases.

STEVE?

THANK YOU STEVE FOR DROPPING BY THE BLOG.

YES, YOU WERE RIGHT ABOUT THE ARTICLE INRE "TRUST, GUARDIANSHIP, POA, AND OTHER STUFF." I MADE THE CORRECTIONS AND NOTIFIED THE MOTHER WHO SUBMITTED THE POST.

AS YOU CAN SEE, WE'VE UPDATED THE INFORMATION HERE AND HOPE THE NEXT TIME YOU DROP BY, YOU CAN GIVE US MORE ADVICE.

KIND REGARDS,
Elisabeth's Really Big Army of Moms, Friends, Advocates.

Compiled by National Dissemination Center for Children w/ Disabilities

Information here relates to the latest authorization of IDEA 2004. In other words, the statute as it was passed by Congress and signed by the President in 2004, and implementing regulations, published August 14., 2006.



VISIT http://nichcy.org/idealist.htm

Special Needs Trust AND What the Government has to say ...

Special Needs Trust

The only reliable method of making sure that the inheritance actually has a chance of reaching a person with a disability when he or she needs it is through the legal device known as a Special Needs Trust (SNT). The SNT is developed to manage resources while maintaining the individual's eligibility for public assistance benefits. How is this done? Simply put, the family leaves whatever resources it deems appropriate to the trust. The trust is managed by a trustee on behalf of the person with the disability.

While government agencies recognize special needs trusts, they have imposed some very stringent rules and regulations upon them. This is why it is vital that any family contemplating using a SNT consult an experienced attorney -- not just one who does general estate planning, but one who is very knowledgeable about SNTs and current government benefit programs. One wrong word or phrase can make the difference between an inheritance that really benefits the person with a disability and one that causes the person to lose access to a wide range of needed services and assistance. As an illustration of this, suppose that the trust instructed the trustee (manager) to pay the person with the disability $100 a month for life. Such a mandatory income might jeopardize government benefit programs, which only allow him or her to have $70 of income each month.

The first thing that may come to mind for most families who have had experience with government benefits is that the government says that a person with a disability cannot have a trust. Correct. However, the special needs trust does not belong to the person with a disability. The trust is established and administered by someone else. The person with the disability does not have a trust. He or she is nominated as a beneficiary of the trust and is usually the only one who receives the benefits. Furthermore, the trustee (manager) is given the absolute discretion to determine when and how much the person should receive.

Given the government's stringent requirements it is critical that the trust be carefully worded and show clearly that the trust:

is established (grantor, settlor) by the family (persons other than the person with the disability);

is managed by a trustee (and successor trustees) other than the person with the disability;

gives the trustee the absolute discretion to provide whatever assistance is required;
should never give the person with the disability more income or resources than permitted by the government;

must be used for supplementary purposes only; it should add to the things provided by the government benefit program, not supplant (replace) them;


defines what it means by supplementary/special needs in general terms, as well as in specific terms related to the unique needs of the person with the disability;

provides instructions for the person's final arrangement (families should assume that when the individual with the disability dies no relatives will be alive who know what the mother and father would have wanted);

determines who should receive the remainder (what is left over) of the trust after the individual with the disability dies;

provides choices for successor trustees -- people or organizations that might be able to take a personal interest in the welfare of the person with the disability;
and protects the trust against creditors or government agencies trying to obtain funds to pay for debts of the person or the family.

Since the trust is a legal arrangement that is regulated by the laws of your state, there will be other sections that your attorney may need to insert. It is important to know that, while the majority of public assistance funds come from the federal government (which provides guidelines for SNTs), it is the responsibility of each state government to regulate trusts and administer the federal benefits. As long as the federal guidelines are followed to the letter, the state will accept the SNT, and the trust will fulfill its function.

What the Social Security Administration Has to Say About Special Needs Trusts

The Social Security Administration's (1990) publication Understanding SSI discusses special needs trusts as follows:

How do resources in this type of trust count in the SSI program?
Money or property in this type of trust for an SSI beneficiary...does not count toward the SSI resource limits of $2,000 for an individual.

How does money from the trust affect the individual's SSI payments?
Money paid directly to the providers for items other than the person's food, clothing, and shelter does not reduce SSI payments. (Items that are not "food, clothing, or shelter" include medical care, telephone bills, education, entertainment.)

Money paid directly to the providers for food, clothing, and shelter does not reduce the individual's SSI payments -- but only up to a limit. No matter how much money is spent for these items, no more than $155.66 (in 1991) is subtracted from the individual's SSI check.
Money paid directly to the individual from the trust reduces the SSI payment. (U.S. Department of Health and Human Services, 1990, p. 46)

Sunday, February 18, 2007

"Her Brother's Autism" by Karen Olsson

It is a daily struggle balancing out our responsibility and the interdependence our children have on others when they are not in our care. Karen Olsson's article "Her Austic Brother" featured in today's NYTimes Magazine brought a clarity to the role parent's play in their child's life and the associated experiences, both negative and positive, without sacrificing the integrity of the family and the ongoing challenges they face sixty seconds of every minute of every hour, every day, in the case of children within the spectrum of autism. Her article was more than a "case study." It was badly needed breath of life for a society in need of reconnecting to their own humanity.I hope everyone will take the time this week to visit the library to read this article about a family experience with two members diagnosed with Autism. This is journalism at its finest moment. http://www.nytimes.com/2007/02/18/magazine/18autistic.t.html?pagewanted=6&n=Top%2fNews%2fHealth%2fDiseases%2c%20Conditions%2c%20and%20Health%20Topics%2fAutism&_r=1