Help for the Future
Gena P. Barnhill
Author of "Right Address … Wrong Planet: Children with Asperger Syndrome Becoming Adults" (About Gena P. Barnhill) (March/April 03)

In working professionally with families of children with an autism spectrum disorder (ASD), the recurrent concerns I hear voiced center on their child's future. For example:

What does the future hold for my child?
Will she ever be able to live alone?
Will she have a place in the world?
Who can help us?

These concerns are expressed regardless of the child's age. Parents of two-year-old children to parents of adults have similar fears associated with their child's future. For our family, these fears became heightened because our son was already in adulthood when he finally received the correct diagnosis of Asperger Syndrome at age 21. The future that most parents think of when they have young children was already upon us, and we did not know where to turn for information and assistance. During our journey with Asperger Syndrome we found information that I would like to pass on other parents and professionals so that they can have a roadmap and a direction to pursue in order to access possible needed services.

Fortunately, public awareness of ASD is increasing and professionals are becoming better equipped with information to assist families. When the child is school-aged, parents can advocate for their child's education through the public school system where their child is guaranteed a free and appropriate education (FAPE). They can also contact their state organization for developmental disabilities to determine of their child qualifies for their services. If the child is receiving special education services, the IEP team needs to develop a transition plan by age 14 to prepare for the transition from the public school system to the adult world. Prior to graduation, a professional from Vocational Rehabilitation Services can be brought into the transition IEP meeting to help make this transition as smooth and seamless as possible.

Unfortunately, there is not one place that families can go to access all of the possible needed services for their adult child with an ASD. One of the best ways to access information is through organizations such as the Autism Society of America (ASA) or the Asperger Syndrome Coalition of the U.S. and through local support groups and other parents that have navigated the social services maze. The Division of Vocational Rehabilitation (VR) can evaluate the individual's vocational strengths and weakness and provide training and assistance depending on the individual's needs. VR is designed to help persons with a physical or mental impairment to become employed. Social Security, Medicare, and Medicaid are other services that your child may qualify for.

The Social Security Administration (1-800-772-1213) administers two separate programs that individuals with disabilities may qualify for. Some individuals receive benefits from both programs. Qualification for Social Security disability benefits is based on the individual's work history and the amount of the benefit is based on the person's earnings. Once an individual has been approved for Social Security based on disability, the waiting period begins. Payments begin the sixth full month from the date of approval. The other Social Security program, Supplemental Security Income (SSI), is financed through general tax revenues, not through Social Security trust finds. SSI benefits are paid to people who have a disability and who don't own much or have a lot of income. Applications for SSI and Social Security disability benefits are filed through your local Social Security office.

Two other government-supported services can provide medical assistance to those who qualify. If an individual has been approved for Social Security because of her disability, she is eligible for Medicare 24 months after she receives the first Social Security disability payment. Currently Medicare does not pay for prescriptions. Some individuals with disabilities may also apply for Medicaid if their income and assets are low. These individuals do not have to wait two years to apply, but can apply immediately. This application is not filed at the Social Security office, but rather at the organization that oversees the Medicaid program for your state. You can also apply for Medicaid if you have not been approved by Social Security. However, the Medicaid program will then need to complete a separate medical evaluation to determine if you qualify. Each Medicaid program is operated by the state and benefits may vary. Some programs only require the individual to pay $2 per prescription purchased and Medicaid pays for the remaining cost. The laws regarding these benefits change, so the family or case manager needs to be aware of these changes to advocate for the person with an ASD.

Another important consideration for all families who have a child with a disability is the development of a special needs trust. This trust protects the person with a disability so that she does not lose government entitlements such as Social Security benefits and Medicaid if she should receive assets or inheritance from family members. In addition, a plan for the lifestyle of the person with a disability once their caretakers are gone needs to be created so that the individual can continue to receive the care the family has requested and so that she does not lose government benefits. A lawyer who specifically deals with disability and/or elder law can assist in developing a special needs trust for your family member.

For more information on planning for your child's future go to:

Autism Society of America www.autism-society.org
Asperger Coalition of the U.S. www.asperger.org
Maap Services www.maapservices.org

Gena P. Barnhill Ph.D. is a special education coordinator and autism consultant for the North Kansas City School District in Kansas City MO. She is a certified school psychologist and mother of a young adult with Asperger syndrome. She has worked with children and youth with special needs in medical and educational settings for the past 28 years and has published numerous articles and has spoken nationally on Asperger syndrome.