PART BOARD OF DIRECTORS
I feel my youngest sister, Linda has trained me all these years on how to respond and love those with disabilities especially those who have extreme behaviors and high medical needs. After our mother could no longer take care of Linda and through a series of events, she now lives at the Brenham State Supported Living Center since 2012. I have been a volunteer for six years at BSSLC and now serve on the Human Rights Committee. My love for my sister has pushed me toward advocacy for all people with disabilities and their right to receive the best care. After working as a postal clerk for seventeen years, I decided I could do more. I went back to school to become a nurse. I spent most of my career as a school nurse but I found the most rewarding position was as the nurse manager at an Alzheimer’s 22 bed facility.
I am now retired and want to focus my time and energy advocating for those individuals with IDD who require 24/7 supervision to be safe.
Liz Belile is thrilled to be the newly-elected Vice President of PART.
She is the legal guardian and older sister of Shanna Belile, who lives and thrives at the Austin State Supported Living Center. (After decades of living at the Richmond State Supported Living Center, outside of Houston, where the family was once based.) Liz took over guardianship of her sister after their father died and their mother’s health declined, in part to protect Shanna’s right to live in the most appropriate setting for her needs.
An avid grassroots political activist, media professional, yoga teacher, bodyworker and writer, Liz draws from all of her life experiences to help advocate for Shanna, and for those who are most profoundly impacted by their disabilities and require the 24/7, 365 support and care that only an ICF can provide. Liz is also the co-vice president of the Family Guardian Association at the Austin SSLC. It is her honor and privilege to be able to lead in PART and in the FGA. She is also a Texas state rep for the national advocacy organization, VOR, and has traveled to Washington, DC to lobby legislators, with VOR, on behalf of her sister.
She lives in Austin with her family, is a UT alum, did her MFA in Creative Writing/Poetry, and is raising a twice-exceptional son. She is very excited to be formally involved with PART, working in concert with fellow family members and guardians across the state, on behalf of the people we love.
I am my sister Jackie’s guardian. Our family moved to Austin, when a judge placed her at the Austin State School, now named the Austin State Supported Living Center. She has been a joy and bossy big sister all this time. Her presence in my life led me to work at the Open Door, a wonderful preschool which has 25% special needs children. After that I went on to become an interpreter for the deaf in educational settings and later retiring from Travis County Services for the Deaf after nine years. Our parents were members of PART at its inception and Mom spent much time advocating for and mothering my precious sister. I took over after our Dad’s health declined and he eventually passed away too in 2017. I feel I am their hands and hearts. I take great comfort and peace in doing all I can to keep her safe, happy and loved..
My name is Norma Delgado, and I am the new Secretary of PART.
My brother, George Garcia, has spent most of his lifetime at the Rio Grande State Supported Living Center in Harlingen, Texas. Despite his condition, his overall quality of life has been quite astonishing. He lives peacefully and continues to receive exceptional care, attention and unconditional love from doctors and staff. Of course, the love we have for him as a family is measured beyond words.
I have served as a Board Member for the Volunteer Services Council and presently serve as President of our Parent Association Group. I was also honored with a Resolution by the Cameron County Commissioner’s Court for my advocacy work in 2006.
When I retired in 2018, I realized that there are many others like my brother who need advocacy. I take great pleasure in spending my own personal time to learn, educate and inform others about this very overlooked and marginalized group of individuals.
My goal as a PART Member is to learn and inform others family members about the importance of the State Supported Living Centers and simply so that our loved ones can receive the best qualify of life that as Texans, they deserve.
I became Darla’s legal guardian in December 2011, two months after her sister, my best friend Esther, passed away unexpectedly. I first met Darla in late 1996, about a year and a half after Esther brought her home from the Richmond State Supported Living Center (SSLC) to live with her. Darla had lived at the Richmond facility since it opened in 1968.
In 1994 my father had a brain aneurysm and was left severely intellectually disabled from the trauma of the brain surgery. The doctors saved his life, but he would be changed forever, along with our family dynamic.
I believe my experience of suddenly having an intellectually disabled father made it easier for me to be around Esther and Darla over the years. I innately understood the dynamics of Darla’s behavior. I wasn’t uncomfortable being around individuals with profound disabilities, which allowed my relationship with Esther and Darla to grow very close over the years.
I witnessed many accomplishments and successes with Darla, along with the extreme challenges of caring for someone with profound intellectual and developmental disabilities (IDD).
When faced with placing Darla in a new living arrangement, I didn’t consider the SSLCs as an option because of the bias against them and the negative talk regarding these “institutions.” With assistance, I found a residential group home that looked good initially and required a new provider, whom I liked, but I had misgivings about the owner of the home. Despite my doubts, I “transitioned” Darla into this new living situation.
Early on, I had concerns. Then the call came a little over a month into Darla’s new life. She had fallen out of her wheelchair at an adult day habilitation program and hit her head on the floor. Darla had always required 24/7 care, and in her new living arrangement, the tough realities of caring for her were surfacing. This fall led to a subdural hematoma, two emergency brain surgeries, and months and months of recovery in two different nursing facilities.
After a long recovery, Darla was placed in a day program for people with IDD, but she was too much for a nursing facility to manage without supplemental direct care workers. In fact, Darla had required supplemental direct care workers for nearly three years while she was in skilled nursing care. Eventually, the nursing facility asked me to find her a new residential placement, and I was faced with a very troubling dilemma. I already thought that Darla was not a good candidate for a residential group home. I researched, made some site visits, and was even more convinced group homes were not the best place for Darla. That’s when I made an appointment to investigate what the Richmond SSLC was all about. Subsequently I decided it was the best choice for Darla’s long-term care.
What I know now, without a doubt, is that Darla needs the kind of 24/7 oversight and care that SSLCs offer, as do thousands of other individuals born with profound and severe IDD, autism, and other extremely disabling intellectual disabilities. The standard of care, the interdisciplinary professional teams, access to immediate medical response, diverse programming, a campus community with socialization, and activities in a community that respects and understands the needs of its individuals are why these centers are so vitally important.
There is no perfect care model for this special population, but the SSLCs are a very good one and much needed by many families with loved ones who require the specialized care they offer. I believe it is our duty to advocate to keep them open and thriving, and to empower them to grow and strive for best practice standards in all modalities. In fact, the need is growing for the kind of care SSLCs offer, and we must help them survive and thrive.