Support for Your Adult Child With a Disability

How does your adult child with a disability or special health care needs get support? Do you worry about how they’ll get care as you get older? What if they need support services they didn’t need before? 

It’s a lot to think about. When there are no easy answers and daily life gets busy, some families have a hard time making plans. Other families find peace of mind when they set up support that can help their children have a good life long into the future.

This page is for parents and caregivers of adult children with disabilities or special health care needs of any age. It includes:

• Tips and ideas from other parents with adult children.
• Information about getting and keeping support, such as waiver programs, Supplemental Security Income (SSI) and personal networks.
• Important links to our other webpages, including our Transition to Adulthood section that has resources for adults of any age, not just teens and young adults.

We hope this page helps you discover new ideas and solutions. Remember, you are not alone. 

Find Support Services and Waiver Programs for Adults With Disabilities

Our Funding and Services From Age 18 webpage lists different types of physical, medical and financial support that your adult child might be able to get. You can also check your Local Intellectual and Developmental Disability Authority (LIDDA). Enter your ZIP code in the Texas Health and Human Services (HHS) search form to find the LIDDA office or other support near you. The Texas HHS Disability webpage is another great place to look for ideas.

Tip 1: Sign Up for Waiver Programs for Long-Term Home and Community Services 

As you may have seen in our Waivers and Wait Lists video, Texas Medicaid waivers are a gateway to long-term home and community-based services for adults and children with disabilities or special health care needs. Waivers are an important service for many people with disabilities. Many children who are not approved for other Medicaid programs are able to get waivers. 

We strongly suggest you learn more about waivers and add your child to any relevant waiver interest list. Some waiver programs have interest lists or waitlists that can be over 15 years long before services start, so it’s important to add your child’s name as soon as you can. 

Each waiver program has its own interest list. Below are links to five waiver programs for long-term services.

• Home and Community-Based Services (HCS) serves people with an intellectual disability or a related condition who live with their families, in their own homes or in small group homes with no more than four people.
• Community Living Assistance and Support Services (CLASS) serves people with conditions other than an intellectual disability, called related conditions, that began before age 22. There are over 200 related conditions, including cerebral palsy, spina bifida, seizures and autism. 
• Deaf Blind with Multiple Disabilities (DBMD) serves people who are deafblind or have a related condition that leads to deafblindness, and who have another disability.
• STAR+PLUS Home and Community-Based Services (HCBS) helps adults ages 21 and older stay in their community and not in a nursing home facility.
• Texas Home Living (TxHmL) serves people with an intellectual disability or a related condition who live in their own home or their family’s home. This program temporarily supports people who are on a waitlist for other waiver programs.

Waivers for Adults and Families in Crisis

Sometimes, your adult child needs more support than you can give. Your child may have new challenges or need different physical, medical or behavioral support than before. Maybe it’s more support than you can offer at home. If you and your adult child are struggling or getting to a crisis point, start by calling or visiting your local LIDDA office and telling them you need immediate help. They can listen to your situation and discuss options.

One goal of the waiver programs is to give people more support and care at home or in the community instead of a nursing home or state supported living center. If there has been a big change or family crisis, you may be able to get started with some waiver services to keep your adult child in their home.

Tip 2: Understand Your Adult Child’s SSI When a Parent Retires

SSI, sometimes called “disability benefits,” is a monthly government payment for people with disabilities or special health care needs. To get SSI, your adult child cannot have money and resources or things they own, called assets, that are worth more than $2,000. Our webpage on SSI explains this in detail.

At age 18, your child may have applied or re-applied for SSI based on their own income and information, which makes them a disabled adult child (DAC). However, if a parent retires, your child’s monthly payment could change. Learn more on the Social Security Administration website.

If your child moves from SSI to Social Security Disability Insurance (SSDI), know that they may still be able to keep their Medicaid health benefits. 

Who Will Care and Advocate for My Child as I Get Older?

We know this is a difficult thing to think about. Our Planning for a Time When You Can’t Care for Your Child page can help you sort through your feelings, find tools and take important steps, even small steps. 

Below are tips and links that can help your child as you get older.

Tip 3: Build Your Child’s Personal Network 

One big way to plan ahead is to create a personal network or group of people who will commit to supporting your child in the future. You can build a personal network now so you know it’s ready when you need it. Learn more on our webpage about personal networks or in this blog article.  

“The hardest thing about starting a network is the courage to ask other people to help. … but [our network] has been a really natural way to deepen relationships with people.”
–Parent quoted in Texas Parent to Parent Video on Personal Networks

For parents considering their child’s future, Texas Parent to Parent recommends the book “A Good Life” by Al Etmanski of PLAN, a parent organization in Canada. The book explores different topics for adults with disabilities to keep in mind. 

This website has up-to-date, Texas-based resources from parents and experts covering important areas of an adult’s life. Some of those topics include:

• Independence and adult decision-making.
• Legal tools and help.
• Friendships and recreational activities.
• Housing, careers and money. 
• Transition to adulthood planning, even if your child is well into their adult years.

Tip 4: Try Online Support Programs

There are many great ways your child can find meaningful activities and relationships. Our page on recreational activities explores in-person and virtual options. Here are some online programs for adults with disabilities:

• Lifelong Learning with Friends at The University of Texas at Austin has college classes for people with intellectual or developmental disabilities. At least 50% of the classes are online.
• Friends Shine Online has three-hour friendship group activities online three days per week. Join for a fee. 
• Generation Patient is for young adults ages 18-35 with chronic or rare conditions. There are open meetings and chances to get involved.

And for you: Texas Parent to Parent has online weekly support groups for parents of children with disabilities who are adults or becoming adults. See the Weekly Parent Support Group in the homepage sidebar to sign up for a session.

Each chapter of life can bring new joys and new challenges. As you care for your adult child, remember that you can always connect with other parents for new ideas, advice and support.