Blogs :: The Handley Law Office Working for Change to Help Families
The Handley Law Office has been working behind the scenes to help enact change in Texas for Special Needs families.
In August, we were invited by The Arc of Texas to attend the Texas Advocates conference in Round Rock where Carey and Caytlin were interviewed by The Arc of Texas CEO Jennifer Martinez for the Arc’s upcoming video compilation, “Waiting on a Waiver”. We shared our family’s story during the interview and we will share the video when it becomes available to us.
In early September, we traveled to Austin for a meeting at a State Senator’s office. Our focus was the Medicaid Waiver Interest Lists and was two-fold: first, pulling from our own experiences and from those of families we talk with at Resource Fairs, a common thread is that there is not consistent notification that these lists exist: not from schools, not from physicians and not from private diagnosticians. We also recently had a meeting with a Texas State Representative for the same purpose.
The other part of our meeting was to make a request that more people be granted access to these programs. More on that later.
For those not familiar with the Medicaid Waiver services, these are programs designed to keep our children with Special Needs in the community rather than in a facility or institution. They offer families much-needed long-term services and supports, some of which include speech, occupational and physical therapies, respite care, day habilitation and more. As many families face lifelong challenges with their children with Special Needs, these programs are a way to offset the enormous cost of parenting a child with disabilities and to help prepare for their future once their parents are no longer here. There are currently approximately 170,000 names on the Interest Lists and the wait for many of these programs can exceed 10+ years.
In our daughter’s situation, although we began having evaluations through private physicians and our home school district when she was 2 years old, we did not learn about the Interest Lists until she was 14 and in a private school for children with Special Needs. Early evaluations in our home school district led to them enrolling her in ECI (Early Childhood Intervention) programs but not mentioning that we should have added her name to the Interest Lists. The director of a private school she attended at age 14 suggested we attend a presentation at the MHMRA, now known as The Harris Center (we were in Harris County at the time and this was our Local Intellectual and Developmental Disability Authority; we are now in Fort Bend County where Texana Center is the LIDDA). I went home and added her name to two of the lists. We were told at the time that there was a 10-12 year wait for services. She is now 28 years old and she has been on the lists for half her life. There are still over 3,000 names ahead of her on one of the lists and over 25,000 names on the other list.
We want to be clear: there are schools and physicians who are doing a great job of giving this information to parents but judging by what we have heard in our conversations at Resource Fairs, too many parents are unaware. It is heartbreaking to tell parents who are ready to pursue guardianship of their soon-to-be 18-year-old that adding their child’s name to these lists years before would have greatly benefitted them now.
Additionally, it is our belief that our state should find a way to reduce the names on the Interest Lists. We recognize that times are tough economically which further validates our point. Many of our children will never live outside the home, will never hold a job that provides meaningful income and we, as parents, will be responsible for their housing, food and transportation for their rest of our lives while we are trying to work our own jobs. Additionally, we must prepare for their care after our deaths. These programs will greatly help offset some of these lifelong costs.
We need your help.
Texas legislature convenes only every other year (odd-numbered years) for 140 calendar days. They will begin meeting in January 2023. If your family has been affected by the lengthy wait for Medicaid Waiver programs or if you were not initially told about these lists, please let your state representative and state senator know. You can also forward your story to Mason Whiteside of The Arc of Texas who is an ally in Austin. While we were encouraged by our meetings, we cannot do this alone. Let them hear your voice - tell them your story and let them know they have the power to help.
We are working to help parents like us. What greater lesson in change can we teach our children? There is hope and we can make a difference.
To inquire about the Texas Medicaid Waiver Interest Lists, contact your Local Intellectual and Developmental Disability Authority: The Harris Center (Harris County): 713-970-7000, Texana Center (Austin, Colorado, Fort Bend, Matagorda, Waller and Wharton Counties): 281-239-1363, Gulf Coast Center (Brazoria and Galveston Counties): 800-643-0967, Tri-County Behavioral Healthcare (Montgomery, Walker and Liberty Counties): 936-334-3275 (City of Liberty), 281-432-3075 (City of Cleveland), 936-521-6200 (Montgomery County), 936-291-5875 (Walker County).