Transitioning to adulthood with a disability—how one family has navigated this big life change

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The Parkers at home, transitioning to adulthood with a disability
Ray and Marta Parker with their daughter Alexa. (Sharron Swain / Bham Now)

Alexa Parker’s parents knew at age four months that she wasn’t hitting the same developmental milestones her brothers had. Little did they know how long it would be before she become eligible for services after aging out of public education at age 21. To help families navigate this big life change, UAB Medicine’s STEP Program and United Ability are teaming up on Transitioning to Adulthood, May 7, from 8:30AM-4:30PM. We’ve got the Parkers’ story and details for how you can register for the event below.

Meet the Parkers

The Parkers with extended family
Ray, Marta and Alexa (left) with other family members on vacation (The Parkers)

To learn more about the challenges families with adults with special needs face, I drove out to visit with the Parkers in their home. I spent a thoroughly enjoyable—and educational—afternoon with parents Ray and Marta, their daughter Alexa and caregiver Germaine Bennett. 

Ray has such a soothing voice, it’s impossible to feel anxious in his presence. He works for a South American-based cement company and participates in United Ability’s Dads of Kids with Special Needs group. 

Originally from Panama, Central America, Marta teaches Spanish at Homewood High School and has a Masters in Special Education.

Together, they have two older boys—one in Chicago and one in Phoenix, as well as grandchildren. 

Their daughter Alexa, 27, lives with them and attends adult day habilitation at United Ability’s LINCPoint Program. Alexa has cerebral palsy with multiple disabilities and profound intellectual disability.

When you watch the Parkers and caregiver Germaine Bennett interact with Alexa, it is clear this is a home filled with so much love. 

When I asked Ray and Marta about their experience with Alexa’s transition to adulthood, they said “it was a challenge, for sure.”

Finding support for loved ones with special needs as they transition to adulthood with a disability

woman swimming with another woman who has a disability
Alexa in her happy place—the water. (The Parkers)

Here are just a few of the major challenges the Parkers faced along the way: 

  1. Finding an appropriate adult setting when children with disabilities age out of public education at 21. “Finding adult daycare is hard—almost impossible.”
  2. Waiting to be able to access services through Medicaid. 
  3. Signing up for Alabama’s adult services waiver program. (The Parkers signed Alexa up at age 14 and she became eligible at age 23 and a half).
  4. Possibly needing to change jobs to be able to provide coverage for their daughter during a 2.5 year gap in services. (Fortunately, Ray’s employer was gracious and offered a 3-day a week work-from-home arrangement, something that was almost unheard of in pre-COVID times.)
  5. Finding reliable transportation to and from daycare.
  6. Needing additional at-home help.
  7. Getting a handicap-accessible van. (Pro tip: the Parkers found just what they needed, used, on Facebook marketplace.)

Sadly, though, many families don’t begin to look at what they’re going to be faced with until their children age out at 21. “You can imagine the decade that they have to go through before they’re able to get services.”

Once Alexa became eligible for services, her advocate through social services said “now that she is finally on the list, these resources are available. And that’s how we were introduced to United Ability.”

Getting connected with United Ability during the transition to adulthood with a disability

Alexa and her caregiver Germaine, transitioning to adulthood with a disability
Alexa with Germaine, one of her caregivers (Germaine Bennett)

One thing the Parkers really appreciate is how United Ability is a one-stop shop, where they can get services for different  things Alexa needs, whether it’s wheelchair adjustments or medical appointments. 

“Their mission really is to help all of the participants, no matter the disability, really be able to learn something. We appreciate that. They call it ‘day habilitation.’ They’re working not just to have a place for your child to go Monday through Friday—they’re actually trying to help them reach milestones.”

The Parkers

Mary Roth, Director of Adult Services at United Ability, has been able to answer many of their questions along the way, and Alexa has her own Support Coordinator who helps with things like finding contractors to make accessibility modifications to their home.

“United Ability allows us to both have careers and know that she is in a safe place that is stimulating for Alexa and challenges her.”

The Parkers

Find out about the services you (or your loved one) need at this can’t-miss event May 7

Ray and Alexa at Euphonius, transitioning to adulthood with a disability
Ray and Alexa at Euphonius (United Ability)

Transitioning to Adulthood with a Disability

This is a one-day workshop designed to help make the transition between pediatric and adult health care smoother.

UAB Medicine’s STEP (Staging Transition for Every Patient) Program + LINCPoint Adult Program, United Ability—some of the event will be livestreamed by Alabama Care on their Facebook page.

In case you haven’t heard of STEP, it’s a UAB Medicine program which helps people with ongoing medical issues move from pediatric to adult health care. 

The goal: to prevent interruptions in medical care and provide support services in a single primary care setting, including physical therapy, social workers, counseling and emergency planning. 

Who the workshop is for

  • People between the age of 14-30 who were born with or developed a disability.
  • Caregivers of people between the age of 14-30 who were born with or developed a disability.
  • Health care providers who work with people with disabilities in this age group, including OTs, PTs, COTAs, PTAs, physicians, nurses, social workers, and students in these areas.

All the details

If this workshop is for you, sign up today so you can learn about all the services and supports the are available to you, as well as how you can access them. Learn more about United Ablity on their website, Facebook or Instagram.

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Sharron Swain

Writer, Interviewer + Adventurer | Telling stories to make a difference

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