How’d You Do It?
When people hear that my three oldest kids have autism AND that they’re all employed, they often ask me how I did it. Like it was all me or something, which it most definitely was not. The kids get most of the credit for their hard work, their positive attitudes, and their determination and willingness to work hard. But if you ask me what I did to set my kids up for the best possible chance at success, there are a few things I could share that might help you and your family, too. The first two are mostly mindsets, while the next four are connections to programs that have supported us along the journey. Whether you’re a parent of a recently diagnosed youngster, or supporting an older individual through the transition to adulthood, read on for six transition tips for a successful adulthood.
1. Remember that you’re raising adults, not kids.
Currently, in IEP paperwork, there is a section devoted to parent concerns. Back when my younger son was seven, this section was actually just one question, “What is your vision for your child?” At his first grade IEP conference with a picture of his adorable toothless self on the projector, I answered this question by saying, “I want him to move out.” Everyone laughed. I was dead serious. I said, “Listen folks, he’s super cute now, and I can’t imagine where he’ll be in 11 years, but I want him to have his own life to the greatest extent possible. In order to do that, he will need to be able to read, and do math, and interact appropriately. What steps can we take in the next year to work him toward that eventual goal of independence?”
This is a difficult distinction to make, especially when your child is little and struggling with the basics of communication and social interactions, but it is vital. Your adorable preschooler who insists on wearing the same shirt every day and screams when they want your attention will be decidedly less cute when they are a screaming, stinking high school junior who has worn the same shirt every day this week. Behaviors are easier to manage now because of your child’s size and how much they want your approval; they will be much more difficult to change when your child is in high school.
Along the same lines, the more independent your child is as an adult, the more choices they will have, which leads to more control over their own lives. Choice and voice are strongly related to happiness.. Start growing that independence now by giving them opportunities for responsibility and choice. What does this look like day to day? Age appropriate chores. I taught one of my high school students how to do his own laundry. He told me yesterday that he doesn’t do it because his Mom doesn’t make him. Most of my students have very few chores or no chores at all. How will they be able to take care of their homes as adults? Put your child in charge of something. Their laundry. The downstairs bathroom. Monday night dinner. Let them choose when they complete the chore or what they make for dinner. Sure, it will not be done as well as you could do it, but that’s not the point. Your child can only learn what they are capable of doing by actually doing it.
That doesn’t mean they should grow up too soon or be in charge of too much, but age appropriate chores make a huge difference in the march toward independence.
2. Start self-care routines early.
When my kids were little, every day ended with a bath and a book before bed. Routines saved my sanity because the kids knew that when bath time started, the countdown to bedtime had begun. Every day they could count on a bath, a snack, brushing their teeth, reading a story together, and going to bed. Obviously the routine changed as they got older. The songs and snuggles we had when they were little disappeared as they grew, but the premise remained. At the end of the day, we take care of our bodies and settle in to sleep.
I’m so glad we created these routines, because when the kids got older, the habit was already set. All but one of my kids (who switched to a morning routine) still shower and wind down before bed. As a high school teacher, however, I have several students that have questionable hygiene habits. One told me last week that he showers every Sunday because his parents make him. While I'm not saying that teenagers have to shower daily, once per week is not enough. The lack of hygiene affects their relationships with peers, their ability to obtain and maintain employment, and in some cases, their health. Make hygiene non-negotiable for your littles, so when they are teenagers, you are not fighting this battle. Their teachers, friends, and future partners will thank you!
3. Apply for the Medicaid Waiver as soon as possible.
Recently in the news due to a new assessment which has made it difficult for some individuals to maintain their waivers, Indiana Home and Community Based Waivers provide supports for individuals with intellectual and developmental disabilities. I applied shortly after my kids were diagnosed and they were on the waiting list for a long time, but the support they have received is worth it! Currently, my younger son is taking a cooking class with peers through his waiver provider. There are four waivers and a deep dive waiver post is coming. However, here’s the quick need to know info:
Waivers can pay for things like therapies, adult day programs, behavioral support, specialized medical equipment, workplace assistance, and respite care for caregivers.
Waiver eligibility means that the individual will also be enrolled in Indiana Medicaid insurance. For families of adult children with disabilities who are approaching age 26, this is helpful reassurance that their child will continue to be insured.
The waivers have waiting lists. Do NOT wait - apply as soon as you can! You can apply online at https://bddsgateway.fssa.in.gov/
4. On or shortly after your child’s 18th birthday, apply for Supplemental Security Income (SSI)
SSI is a program through the Social Security Administration that provides monthly payments to individuals with disabilities and older adults who have little to no income or resources. Here’s the important information on SSI:
Some children with disabilities receive SSI based on their parents’ income. When they turn 18, they must reapply for SSI as an adult. If you do not apply on or close to the child’s birthday, they could have a lag in payments.
Once individuals with disabilities turn 18, Social Security only counts their income, not the parents’ income in calculating resources.
Even if your child is working, they can apply for SSI. My older son does not receive SSI payments, but he has been declared eligible and if he were to lose his job, he would begin receiving payments to support him.
Once individuals with disabilities turn 18, they must qualify as having a disability through the Social Security Administration in order to maintain their Medicaid Waiver.
More information and application can be found at this link: https://www.ssa.gov/ssi/eligibility
5. Research guardianship and guardianship alternatives, and be prepared to enact your plan shortly after your child’s 18th birthday.
Children with disabilities who turn 18 become adults with the same rights as any other individual, but also the same responsibilities. Legally, this means that parents can no longer speak to their child’s doctor or make financial decisions on behalf of their now-adult child. If you feel your child will need support with decision-making past their 18th birthday, look into your options now. Individuals can receive additional support in a variety of ways. Here is a very brief overview of some of the alternatives:
Guardianship is the most comprehensive, requiring a hearing in which a judge declares the individual incapacitated and in need of someone to take care of them. While this is the appropriate option for some individuals, it is difficult to reverse and disempowers the individual, preventing them from being able to make decisions on their own.
Limited guardianship appoints a guardian for a specific area of a person’s life, such as medical, so the guardian steps in to help make medical decisions on an individual's behalf. This is less restrictive.
Power of attorney allows a person to step in and help an individual in various situations without taking away the individual’s ability to make those decisions independently. For example, I have medical power of attorney for my son, so I am allowed to call and speak with his doctor about issues he is having, but my son is also able to make that same call.
Supported decision making is a less restrictive alternative in which an individual with a disability asks trusted people in their life to assist them in making various decisions. A supported decision making agreement can be filed with a court.
In Indiana, a person seeking guardianship over an individual with a disability must prove they have attempted less restrictive alternatives such as supported decision making.
6. Apply for Vocational Rehabilitation approximately a year prior to your child’s exit date from high school.
Vocational rehabilitation (also called Voc Rehab or simply VR) is a program that helps individuals with a physical or mental impairment obtain or maintain employment. Individuals who qualify will work with a job coach to “discover” the job they would like to have and then work to apply and/or find training to become qualified for that occupation. My sons have benefited greatly from their VR connections:
My older son’s training program at Erkine Green Training Institute was funded by VR.
My younger son found his first job with his VR job coach.
Both sons have received support from job coaches at their work sites.
Both sons learned to drive (after obtaining employment) through VR programs.
Everyone’s experience with VR will be different, and I know not all are positive. However, I can say with confidence that my sons would not be where they are today without VR.
My last four suggestions are programs that require applications. You may be thinking that your child won’t qualify for the program. While that may be true, if they have a documented disability, it’s also likely that they will. Fill out the application and let the professionals decide!
Does this all still sound too confusing or overwhelming? Reach out to me and schedule a session. We can talk through your options and create a plan that works for your family!
