Caring for an Adult Child with Disabilities

If you have an adult child with disabilities and you’re in or nearing retirement you may have worries. Read these six tips from a parent who has lived it.

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We want the best for our kids no matter what age/stage they’re in, but there’s more complexity as we ourselves are aging and we want to ensure that our kids are set up for independence and are able to live full, fruitful lives once we’re gone.

As you’re moving into the later ages and stages of your own life, your attention is likely turned to what’s next for you as you clarify goals for retirement, maybe travel or more time to yourself. If you are the parent of an adult child with disabilities your attention also includes how that will look for your son or daughter especially if they reside with you or rely upon you for support or care.

Below are some things to consider as you plan for your own future and the future for your adult child.

Don’t wait, talk and plan now

Cheryl Caira is a mom from Framingham, Massachusetts whose adult daughter, Jordan, has Down syndrome. She shares, “Don’t wait until your child is 22 to ask, ‘what do I do?’ With Jordan, we kept looking ahead at least a year out about what you want for them? We learned that your child does not have to mirror another child with a disability.” Discuss the future with your adult child sooner rather than later about what they want for themselves and start to brainstorm a plan for what the next phase of life looks like based on your specific situation. 

Update forms to allow open communication and decision-making

The Health Insurance Portability and Accountability Act of 1995, commonly known as HIPAA, is a federal law that created national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge. As a result of this, when your child turns 18, you as their parent cannot access their medical records or speak to their doctors without their written permission. 

 

It’s a good idea to have this conversation with your adult child and whether there’s a need for you to have a signed HIPAA release form on file especially if your child has medical, cognitive or mental health challenges that would require you to step in to help make decisions on their behalf. As you age, it’s important to plan for the future after you’re gone and determine who will step up in your absence should this still be a need for your adult child.

Become familiar with the Americans with Disabilities Act (ADA)

The Americans with Disabilities Act (ADA) is a federal civil rights law that prohibits discrimination against people with disabilities. Knowing your rights under the law is important not only for you but for your child if they are able to understand. 

A parent speaks from experience and shares her advice

Cheryl has learned a lot from her journey with her daughter. She shares, “Having a daughter with Down syndrome can have its own set of issues but having a child with Down syndrome who is becoming an adult branches into a whole different set of concerns. We started to think about what I call morbid thoughts i.e. What happens if we die? What happens if we become incapacitated and need help ourselves? Who will make sure she gets everything she needs?”

Any parent can understand these concerns whether they have a child with a disability or not, but when your child needs extra support or lives with you it can leave you feeling extra anxious about all of your futures. Cheryl offers the following six tips from her own experience that may help!

  1. Become an expert in your adult child: If you aren’t already, become the expert in your adult child (likes, dislikes, passions, quirks, etc.). Cheryl started a small journal that she would update on her daughter Jordan’s birthday. She shares, “This way it did not take me days upon days to do it and anyone could read it and get a glimpse of what our vision was.”
  2. Have an updated family medical sheet: This took Cheryl a bit of time to compile but she says, “it has been worth its weight in gold. I can hand over this sheet to any new doctor and keep it updated. What, if any, meds she is allergic to. What meds (including vitamins) she takes. And then I list any medical issues in her immediate family (diabetes, heart disease, cancer, etc.). It’s literally one sheet and once it’s done, I only have to update it if something comes up to add.”
  3. Consider opening an Able Account: The Achieving a Better Life Experience (ABLE) Act was signed into law in 2014 and allowed the creation of tax-free savings accounts for individuals with disabilities diagnosed before the age of 26 to cover qualified disability-related expenses including education, housing and transportation. The law eases the financial strains faced by individuals with disabilities and the funds contributed will not negatively impact the person’s eligibility for public benefits like Medicaid.

    Cheryl shares, “Having an ABLE account is monumental for adults with disabilities that rely on benefits and social service agencies that monitor her money. As she cannot have any more than $2000 in assets, this means without an ABLE account or special needs trust, she cannot save any money.  We learned that if something did happen, and she had no way of saving, it would be up to someone else to supplement what she needed.  That ‘someone else’ may not have the resources or willingness to do so.”

  4. Prioritize estate planning: Estate planning is important for everyone to consider but especially so when you have an adult child with disabilities. Consider a special needs trust or at least a family will or trust. Cheryl shares, “This was the hardest thing for us to do because you have to address the “what if I die” scenario and then list what you would like to happen to her and who can be responsible.” She goes on to say, “Finding people to fill roles like her guardian, trustee, etc. was extremely hard for us. We did find an amazing lawyer that helped us target people and we finished with a great document.”

  5. Use services that are already in place. By the time your child reaches adulthood, you likely have many services in place for them already. Cheryl says don’t recreate the wheel, “Yes, you can create your own, but it is exhausting, time consuming and can easily fizzle out if you become burned out.”

  6. Do your homework re: living situations. Thoroughly research shared living environments or group homes in your state including guidelines. Network with other parents and ask questions. Cheryl has seen many examples in her years as an advocate of homes being restricted in their reach. She shares, “For example, your adult child goes out and gets sunburned because they forgot to put on sunscreen. The non-guardian cannot simply put on a cream to help with the burn and give them Tylenol for pain. They need to reach out to a doctor and get a doctor’s note to do this while your child is waiting, in pain, for sometimes days (depending on when doctors are reached out). I have also witnessed people that are in homes that are watched by case managers. These amazing people work an 8-4 or 9-5 shift and are pushed to the very brink of exhaustion. Now what happens if there is a holiday and these case managers are off?” Knowledge truly is power.

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