Dear Governor Brown: Is There a Future for the Disabled — Including Adults With Autism — In the Golden State?

May 19, 2011

This first was published on HuffingtonPost.com,  May 18, 2011

Dear Governor Brown,

Recently, I read a an article in Disability Scoop discussing a 50-state analysis from United Cerebral Palsy that compared services to the disabled offered across the country, giving preference to states where more individuals are served in the community as opposed to institutions.

California ranked as one of the highest states, coming in at number five. This should have made me happy, considering I’m an autism advocate known for my expertise on transition to adulthood, and I have a son who is now at that magical age of 22 where he is now eligible for adult services.

However, the looming budget cuts remind me of the old Prop 13 days. You were opposed to the passage of Proposition 13, the People’s Initiative to Limit Property Taxation, when you were governor back then. This amendment of the Constitution of California enacted during 1978 cut property taxes, and this decrease in property taxes had a negative effect on public education.

California public schools, which during the 1960s had been ranked nationally as among the best, have decreased to 48th in many surveys of student achievement. Until 1985, California’s spending per pupil was the same as the national average, when it began decreasing.

Years ago, after the passage of the Lanterman Act which gave civil rights to individuals with developmental disabilities in California, I helped prepare young men and women from de-institutionalization so they could live in their own community. Now, my son is 22 and I fear that with the looming budget cuts, the civil rights of many like him will be destroyed, and that institutionalization will once again be the norm for people like him.

Money may not buy happiness, but it does help in providing people the tools to have an education and become a productive member of society, as well as the right to live fully included in the community.

Can you imagine even trying to cut the hard earned civil rights of the African-Americans, or women — two groups who had to fight to be given the same rights as any other (read white male) American? Yet, the state of California is getting ready to cut the civil rights of the disabled and no one seems to notice. The parents of the disabled are so tired caring for their dependent adults and trying to make money they don’t have the time to march or protest in full force.

My son, Jeremy, would be glad to visit you in Sacramento if you need to put a face on the possibilities of the disabled when given a chance, and when families are given the supports needed. You can see how far he has come thanks to his hard work, IDEA and the hard-working public educators. Now, we are struggling to plan his future as budget cuts loom. He wants to become a contributing member of society, but without some help, he won’t be able to do so. What will happen to him, and those like him?

Governor Brown, please think carefully about the civil rights of those with disabilities when you reflect on the budget cuts. They need and deserve our support.

Respectfully,

Chantal Sicile-Kira

 

Making sure your child with autism gets a good education at school

March 23, 2011

A good education is important to helping a child to develop and learn. In the United States we are very fortunate to have The Individuals with Disabilities Education Act (IDEA). If your child has an autism spectrum disorder and needs special education, you will need to become familiar with the rights your child has under (IDEA).

Since 1975, IDEA  requires  that  all individuals  have access to a ‘free and appropriate education (FAPE).’ IDEA is a federal act, and  each state may not take away the special education rights provided under IDEA, but may provide more.

Basically, every child  under the age of three and at risk of developing a substantial disability if early interventions are not provided is eligible for early intervention. The names of the different programs my vary by state, but  you can check with  your state’s Department of Health, Department of Developmental Disability, or Department of Education about early intervention. If you need help finding help or information in your area, look at the website of the Federal Interagency Coordinating Council (www.fed-icc.org).

In the educational system, if a student is eligible, an Individualized Education Program (IEP) is developed that  sets out the ways the child will be helped with his areas of difficulties, and  goals and objectives are developed. The IEP is developed by an IEP team at IEP’s that take place at least annually.

An IEP team consists of the parents, the child’s teacher, a general education teacher, a special education administrator, any professionals providing services such as occupational therapy,  speech and language therapy, and adapted physical education.

Sometimes, some members of the IEP team and / or the parents may not be in agreement as to how a child’s educational needs should be  met, and what constitutes a ‘free and appropriate education’ for your child. As a parent, it is important to get to know how your child learns. Remember that you are the expert on your child. Also, it is important to keep abreast of the educational methods that are out there that may help your child.

If you are in disagreement with the rest of the IEP team, there are appropriate ways for you to express your disagreement. The first step is to try and have good and open communication with your child’s teacher and other professionals involved in helping your child with his difficulties. The second is to make sure you know your child’s rights under IDEA. As a parent you will need to become an advocate for your child.

As laws and regulations change, parents and educators can  stay informed   by  checking the US Department  of Education (www.ed.gov) and your state department of education.

Most, if not all, states have an agency that helps people with disabilities and tells you your rights in plain language, and provides information in different languages.  To find out how your state interprets IDEA, These are usually called Protection and Advocacy offices. Often these agencies have decoded the complicated IDEA and made it available on-line in easy to understand layman terms so that parents can understand the rights their children have in terms of education.

In my next post, I’ll cover some autism parenting tips to ensure your child is getting the education he or she needs. You can also read more in my book, Autism Spectrum Disorders. Tips on how to communicate and negotiate more effectively with your school will be given in the course  Empowerment Strategies for the ASD Parent on Thursdays May 5,12,19,26, from 6:00 – 8:00 PM PST.