Pinthouse Pizza
Hearing All Voices
RECEIVED Wed., April 1, 2015
Dear Editor,
As someone who has transitioned to an advocacy role for people with intellectual and developmental disabilities (IDD) after seven years of direct service, I was shocked and saddened that the voice of people with IDD was completely absent in Mary Tuma’s “Sun to Set on Severely Disabled Patients,” [News, Aug. 15, 2014] "Evicted and Helpless," [News, Sept. 19, 2014] and the recent “Senate Votes to Close Austin State Supported Living Center” [News, April 17]. Ms. Tuma’s language mirrors an unfortunate trend. Once again, some guardian’s emotional but often misguided or outright false statements are sensationalized, while the wishes of people with disabilities are muted and other parents, state evaluators, and disability rights groups are ignored.
There are over 100,000 Texans with IDD currently on the waiting list for community-based services; the average wait time is 13 years. Only 3,443 folks live in SSLCs statewide. It costs approximately $113,000 a year more to house someone in a SSLC than in the community with the same degree of disability and need for care. Eight times as many people with the most complex medical needs live in the community than in SSLCs. In fact, only 16 people with the most complex medical needs live in SSLCs statewide. Everyday, over 100,000 people with all levels of disability and their guardians choose to pay out of pocket, forgo crucial therapies, limit their work options, and tolerate problematic living situations, rather than move into a SSLC. The structure for all to live in the community is there; all that is missing is the funding.
Perhaps most egregious is the glossing over of the issues that have plagued the Austin SSLC. Independent Department of Justice settlement monitors found that in 2014, staff overused restraints, used illegal restraints, used psychotropic medications in place of treatment programs, failed to ensure that people received needed psychological services, failed to adequately inform residents and families of community options, failed to inform families of serious incidents, failed to ensure mealtime practices did not pose undue risk to residents, and failed to ensure current, generally accepted nursing practices. There are over 100 more noncompliance issues.
Every single person with a disability who testified at the recent Capitol hearings, including previous SSLC residents, testified in support of closure. The people who will be most affected are shouting for community choice. My sincere hope is that the Chronicle will strive to hear all voices in the future.
As someone who has transitioned to an advocacy role for people with intellectual and developmental disabilities (IDD) after seven years of direct service, I was shocked and saddened that the voice of people with IDD was completely absent in Mary Tuma’s “Sun to Set on Severely Disabled Patients,” [News, Aug. 15, 2014] "Evicted and Helpless," [News, Sept. 19, 2014] and the recent “Senate Votes to Close Austin State Supported Living Center” [News, April 17]. Ms. Tuma’s language mirrors an unfortunate trend. Once again, some guardian’s emotional but often misguided or outright false statements are sensationalized, while the wishes of people with disabilities are muted and other parents, state evaluators, and disability rights groups are ignored.
There are over 100,000 Texans with IDD currently on the waiting list for community-based services; the average wait time is 13 years. Only 3,443 folks live in SSLCs statewide. It costs approximately $113,000 a year more to house someone in a SSLC than in the community with the same degree of disability and need for care. Eight times as many people with the most complex medical needs live in the community than in SSLCs. In fact, only 16 people with the most complex medical needs live in SSLCs statewide. Everyday, over 100,000 people with all levels of disability and their guardians choose to pay out of pocket, forgo crucial therapies, limit their work options, and tolerate problematic living situations, rather than move into a SSLC. The structure for all to live in the community is there; all that is missing is the funding.
Perhaps most egregious is the glossing over of the issues that have plagued the Austin SSLC. Independent Department of Justice settlement monitors found that in 2014, staff overused restraints, used illegal restraints, used psychotropic medications in place of treatment programs, failed to ensure that people received needed psychological services, failed to adequately inform residents and families of community options, failed to inform families of serious incidents, failed to ensure mealtime practices did not pose undue risk to residents, and failed to ensure current, generally accepted nursing practices. There are over 100 more noncompliance issues.
Every single person with a disability who testified at the recent Capitol hearings, including previous SSLC residents, testified in support of closure. The people who will be most affected are shouting for community choice. My sincere hope is that the Chronicle will strive to hear all voices in the future.
Alexa Schoeman