My Child is Turning 18…Now What?
Growing up can be scary. Becoming an adult is a major moment in life with many implications. If you’re the parent of a child with autism, you too are probably a bit frightened about what that means for your child.
The key to preparing for when children on the spectrum turn 18 is to start when they turn 16. That way, you can have all of your ducks in a row when they celebrate their 18th birthday. If you wait too long to address your child’s pending adulthood, it may not be a happy birthday.
Children become legal adults on their 18th birthday, regardless of any disabilities. At that point, they have the right to make any and all decisions about their lives, without interference from their parents. Naturally, they also then have to deal with the ramifications of those decisions.
Seeking legal guardianship can be very important for the parents of children on the autism spectrum, because when those children turn 18 they may not be able to handle the responsibility of making life-altering decisions. If your child’s development is delayed to the point where they should not be entering into legal contracts, then it is probably a good idea to seriously consider seeking guardianship.
If you’re going to pursue legal guardianship of your child, we recommend you begin that process two years ahead of time, because it’s a lengthy process and it becomes more difficult if you start it after your child turns 18.
To obtain guardianship of your child, you’ll need to hire an attorney, because your legal case will be presented to a judge. The judge assigned to your case will determine if your child is fully capable of handling the responsibilities of adulthood. If the judge rules in your favor, one of a few different types of guardianships will be applied to your case, such as a limited guardianship that provides a layer of protection until your child is able to make responsible decisions.
The criteria a judge will use to determine whether or not to grant you guardianship of your adult child is largely based on the claims you make during the application process. Medical records and school records that indicate your child’s function level are considered. Documentation from your Waiver service providers can also be used to prove—based on the types of behaviors still being exhibited—your child is not ready to make adult decisions.
We recommend you consider whether or not seeking guardianship is warranted for your adult child. If so, begin the process sooner rather than later.
If you have not yet qualified for the Medicaid Waiver, you need to apply for that critical assistance before your child turns 18. If you don’t have legal guardianship on your child’s 18th birthday and you have not applied for the Medicaid Waiver, then the responsibility to complete all of those application tasks falls on your child.
Supplemental Security Income (SSI)
In Indiana, disability determination is made through the Supplemental Security Income (SSI) application. When children are under the age of 18, they can apply for SSI under their parents as a child with a disability. They can receive their SSI payments and Medicaid Waiver benefits as a dependent child, but when they turn 18 their eligibility is based on whether or not they can be employed. Unfortunately, parents often do not have enough information in their medical records to prove their adult child is not employable.
We recommend that parents have their child’s physician place documentation into the child’s recent medical records (after the age of 16) that indicates the reasons why it would be difficult for the child to be employed. We make this recommendation because when the child turns 18, you have to apply for SSI to maintain other services being received, such as the Medicaid Waiver and Medicaid Disability. If you don’t apply for SSI for your child, you will lose your child’s Waiver eligibility and disability insurance. Obviously, applying for SSI at the right time is very important.
SSI is very complicated. You will probably be denied the first time you apply for SSI, because only about 30% of applications are approved right away. Then you move to the first appeal process, but the first appeal is handled by the same people who initially denied your application, so that is usually not a fruitful endeavor.
Your second appeal will be heard by a governing board of judges who are much more willing to consider support documentation that was not considered during the initial application or your first appeal. Therefore, proving your child’s disability becomes easier, due to more information being available to the decision-makers on the board. But, because so many people are in the second appeal process, it could take up to two years from the time you apply to when you receive a favorable second appeal decision—if you have sufficiently presented your child’s legitimate need.
As mentioned, SSI is very complicated (and bureaucratic), however, as long as you’re in the process of applying or appealing a denial decision, you child won’t lose Waiver services or Medicaid Disability. To repeat: Your child must apply for SSI at age 18 or bad things will happen!
Transitioning Out of School
By the age of 18, most kids on the spectrum will soon be transiting out of high school—either in the next few months or the next few years. Therefore, it’s important to speak with administrators from your child’s school system about what the transition will look like.
You should discuss what your child will do after graduating with a degree or receiving a certificate of completion. Discuss your child’s skill level and whether or not a local day program would be appropriate while you’re at work. Discuss the possibility of post-secondary education and which institutions or colleges proactively support individuals with autism. Many community colleges and universities do have support programs in place to help with the transition into an environment of higher learning.
After your child leaves high school, if attending college or some other type of educational training is not in the cards, is employment an option? If so, what type of job is your child capable of performing? Would your child need assistance with the job hunt—and how would you find that help?
A few programs are available to individuals on the spectrum who are seeking employment. Vocational Rehabilitation (VR) is a program (offered through the State of Indiana) that helps people with disabilities prepare for employment. To obtain VR services, you need to meet certain qualification criteria, so it is somewhat limited—but we do recommend that you apply for it.
Another program specific to our organization is the ASI Career Ally program. This program is similar to VR in that we help people gain the skills to find employment. Our program is different than the state’s program, because we focus only on individuals with autism rather than people who have all types of disabilities. Our program also focuses more on one-to-one help. However, we currently only offer our Career Ally program in Indianapolis and Fort Wayne.
When to Start Planning
Many—or most—parents of children on the spectrum spend so much time and energy focused on helping their children make it through school that they tend to delay or ignore planning for what happens afterwards. That’s easily understood, but you really need to start focusing on the long-term future when your child is 16 years old.
As a general rule, you should first consider applying for guardianship, because that process takes the longest and you want it completed before your child’s 18th birthday. The second process to focus on is applying for the Medicaid Waiver, because you don’t need to complete the entire process before your child turns 18; you only need to have started the application process. You cannot apply for SSI based on whether your child is an employable adult until your child has turned 18, so that naturally becomes the third process to focus on.
Your ASI Ally can help you plan for your child’s adulthood. We can help you deal with the guardianship application process, the Medicaid Waiver application, the SSI application process, the SSI appeal process, employment preparation, and job hunting. For more information about any or all of the topics mentioned above, don’t hesitate to contact us. We’re here to help you.
Thanks to Kelly Pence, Autism Society of Indiana Autism Ally, for her contribution to this article. If you have any questions, please contact her at firstname.lastname@example.org or by calling 800-609-8449 x303.