KATY – A local family is fighting for change so that special needs children can get the care they need and deserve.
The Handley family proposed a bill in the last Texas legislative session that would require school districts to refer students with disabilities to their Local Intellectual and Developmental Disability Authority (LIDDA) the moment they are diagnosed.
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Doing so would ensure families are notified about Medicaid Waiver Programs and the services and support available to special needs families at the time of a child’s diagnosis, and for more waiver slots to open up so families can get the help they need.
Carey Nelson Handley and her husband Boyd said they were not aware of the lists until their daughter Caytlin was 14-years-old. She is still waiting for services at age 30.
“We want families to be knowledgeable about what services and supports are available to their children with special needs as they go through life. The Handley bill was started because we have actually been on what’s called the Medicaid waiver Interest Lists for 16 and a half years,” Handley said.
Medicaid home and community-based services (HCBS) provide opportunities for people to receive cost-effective, long-term services and supports in their own home, rather than in an institutional setting, allowing them to live and work in their community.
HCBS waiver services can include, but are not limited to:
- Personal assistance services
- In-home or out-of-home respite care
- Home nursing services
- Medical equipment and supplies
- Assisted living
- Employment supports
- Cognitive rehabilitation
- Occupational, physical, and speech therapies
Most of these programs have a 15 to 20 year waiting list, and the Handley family have been working with non-profit group The Arc of Texas to address this issue.
According to the Kaiser Family Foundation, Texas is one of six states that don’t pre-qualify people before adding them to the lists, which causes a huge disparity in the waiting times for services.
Handley believes there’s a push for institutionalization in Texas, rather than supporting families who choose to keep their loved ones at home.
Like so many special needs parents, Carey Nelson Handley has taken it upon herself to help her daughter have a fulfilling life filled with opportunities for jobs and social interaction. Caytlin actually has four jobs, and works at Brookwood Community in Gallery Furniture, All Pets Animal Hospital, Howdy’s Homemade Ice Cream, and Dogtopia Fulshear. Handley found all these jobs for Caytlin, and the ones that came before.
The Handley Law Office is dedicated to making sure other special needs families have the resources to know what they legally need to do to take care of their loved ones, now and in the future. This dedication was taken all the way to the Texas State Capitol building, where the Handley’s testified for House Bill 4716, also known as “the Handley bill.”
It was passed in the Texas House, but it was not heard in the Senate.
They hope the Texas legislature will take up the bill again in January of next year.
In the meantime, the Handley’s are a common presence at Resource Fairs, spreading the word about services to other families. To find an event near you, click here.
You can also find more information on the Handley Law Office website by clicking here.
