I’d like to talk about two numbers: 21 and 2,000. We need to be very aware of them.
My son is a teen now, so I attend a lot of Transitioning Youth meetings. The last meeting I went to was incredibly depressing because there were parents there with adult children in their early 20s, who had no access to benefits. They all had 21 or 2,000 problems, or both.
The 21 problem
Age 21 is the age of diagnosis, and these families missed that deadline. For a variety of reasons, these adult children did not have thorough diagnosis paperwork from before the age of 21. It is incredibly difficult to get services for an adult child if a diagnosis was not made before age 21. It is crucial, vital, and absolutely necessary to get full documentation of all disabilities affecting a child before age 21. Make sure every diagnosis is included. Build a solid paperwork trail. Keep track of all the important documents throughout the years: diagnosis, evaluations, reports, IEPs, etc.
The 2,000 problem
Some of the adult children had assets worth more than $2,000. In some cases, the families had purchased a car or a condo for the adult child, and put the asset in the child’s name. This is a huge, horrible mistake. If an adult child has assets over $2,000 he or she is automatically ineligible for benefits; this is federal law. So, review your child’s financial assets. You may think your child has no assets, but watch out for the sneaky things: Grandma buys a $100 Savings Bond every year for your child’s birthday, or Uncle Bert plans to leave $5,000 to your child in his will. These assets will make your child ineligible for disability benefits.
Get legal advice!
There are ways to build up assets for your child legally via a Special Needs Trust, and the ABLE Act is now becoming available in many states. Educate yourself, stay on top of your paperwork and your child’s financial situation. Remember 21 and 2,000. On the flip side, the parents at this meeting whose children had been diagnosed before age 21 and who monitored the $2,000 issue had full benefits for their children: Social Security, medical assistance, housing vouchers, vocational training, and so forth.
It is so important to get the benefits. If your adult child does achieve financial independence, his or her benefits will be reduced, but the child will retain ELIGIBILITY. So, if the adult child is laid off, the benefits can quickly be reinstated. It is a flexible system that responds to changes in the adult child’s situation.
One troubling development I’ve noticed is parents of younger children who report that schools try to dodge the autism diagnosis and go for something else. This is an incredibly painful situation for the parents. Insist that the full diagnosis be included in all the paperwork. It’s easier to fight this battle at age 4 than at age 21.
P.S. These rules apply in the U.S. Other countries have different rules.
The author, Martha Gabler, is the mother of a nonverbal teen son with severe autism. To help him, the family focused on scientific methods for working with a child with autism. Many parents know about ABA (Applied Behavior Analysis). In addition to ABA, Martha found out about a less well-known method based on ABA: Teaching with Acoustical Guidance (TAGteach). She realized instantly that this easy, inexpensive method for positive behavior change could be a huge help. This turned out to be the case. Her son is now a delightful, happy teen who loves life and loves going places. He still has autism, but life is much better for the family. She tells her story on her website, Chaos to Calm.