June 10, 2019
Texas Governor’s Committee On People With Disabilities
Aaron W. Bangor, Chair
1100 San Jacinto
Austin, Texas 78701
Sent via email to: firstname.lastname@example.org / Nancy.VanLoan@gov.texas.gov
Comments For June 11-12, 2019 Meeting Of Texas GCPD
Dear Chair and Committee Members,
At 70 years of age, I am living alone, disabled by brain injury from a stroke in 2001, also congenitally blind in one eye and with a hole in the retina of the other. My home and ten acres of land are in rural Llano County where I moved to 12 years ago to pursue my own rehab as a disabled small farmer, being a life long agricultural professional, formerly licensed and successfully self employed. It is a very difficult rehab, this is the type of work I love most. I can not perform or produce per my former professional standards, though the natural surroundings which are my “office” are very healing. I’ve planted a small orchard which after 6 years is beginning its mature and productive years ahead, as well as raising a few milk goats. Though I can write about this and do some things well my disabilities are more significant than most an imagine.
Unfortunately, I am very much at risk due to the failures yet of my government and society to understand the disability of brain injury, especially combined with partial blindness, and to provide adequate help and support services, even when promised. Although I was featured in the Dallas Morning News “Pain and Profit” expose a year ago about Texans being neglected, abused, and put at risk by the failures of privatized Medicaid and the HHSC, I am still without the mandated services due, at increasing risk, and have been denied legal representation by Texas Rio Grand Legal Aid, which treated me in a manner very disrespectful of and damaging to a person with my disabilities.
The HHSC Commissioner, General Counsel, Chief Policy Officer, and Director of the Ombudsman’s Office, and many members of the Texas Legislature, are all aware of my plight and have failed to adequately address the damaging mistakes made by the HHSC and it contractors. Let me put it this way, at present I am unable to do my meager monthly grocery shopping and have no one and now way to help get that done. I am also waiting for HHSC approval and coordination for protective lensed prescription eyeglasses to prevent me from going blind due to overexposure to sunlight through my damaged retina. I have been waiting 4 years for this vital protection and the Ombudsman had indicated all would be lined up in March, though it is still not. And there is more, much more.
There are many things which must change now for me and for at least 1 million of the 3.4 million Texans with disabilities so that we are not at risk and can lead simple lives independently in the community with simple reliable help. Some of the most important changes are:
– Providing adequate legal representation, protection and advocacy
– Providing adequate, well coordinated and comprehensive HHSC support services
– Broadening public, government, and businesses disability awareness
– Increasing compliance with ADA Title II requirements by governments and legislatures
– Providing inclusion through communication assistive devices, internet, and technology
– Providing sufficient housing and assistance with in home living and home maintenance
– Providing rehab training for all at the workforce, self employed, or any level of productivity
– Increasing hiring of people with disabilities in government , including the legislature
– Increasing state business contracts with disability owned businesses
– Improving emergency preparedness
– Removing unjust State Sales Taxes on Texans with Cognitive Disabilities
The Texas Legislature had a golden opportunity to address some of these and other disability issues this session, but failed to do so, such as:
– The Senate failed to act on HB 4462, which passed unanimously, which would have created a task force to study the accessibility to legal services for Texans with disabilities.
– The House Human Services Committee did not even grant a hearing to HB 3769 for the establishment of the coordination of disability services pilot program, which was blocked I am sure by the HHSC.
– Myself and others with disabilities also voiced and wrote complaints regarding not being granted equal access to the House legislative process as required by the ADA Title II. The Speaker’s Office is discussing with me an Interim Study Charge to the House Administration Committee to address these concerns.
– The House Ways and Means Committee heard, but failed to pass HB 3491, which would have granted at least 800,000 Texans with Cognitive Disabilities the same State Sales Tax Exemptions for adaptive devices and services now granted to Texans with mobility, hearing, and visual disabilities. The failure to exempt such a tax violates ADA Title II in that it denies Texans with Cognitive Disabilities the same state benefits enjoyed by others. The Committee Substitute for HB 3491 offered a much needed definition for Cognitive Disabilities.
– The Budget Conference Committee failed to cure this unfair tax revenue totaling approximately $160 million per biennium by using it to give home care attendants a pay raise as requested by the Governor and HHSC, though not funded by either the Senate or the House in their budgets.
The past 18 years have been almost constant adversity, though not without joyful moments, and the countless times I have been mistreated, violated, neglected, and abuse have caused additional trauma, ptsd, and damage to my already disabled functioning.
It is impossible for those with “normal brains” to come anywhere close to understanding life with brain injury. I am a creative, imaginative, compassionate, intelligent person, who thought he knew what being disabled was due to being blind in one eye, but I could never have come close myself to imagining or understanding a life with brain injury or other Cognitive Disabilities. So I have to be forgiving not only of my own disabilities, but also of the inability of others to comprehend what I and so many others face. How many times though do I have to hear the words, but you don’t look disabled.
The leading disabler of people under 30 is brain injury, strokes are the leading disabler of adults, and yet there are few programs and services for us and little understanding of our condition. The ADA is unique in that it requires the needs of each individual person and their disabilities and needs to be respected and accommodated, and is not a one size fits all law, the only such law as far as I know.
This uniqueness is especially true with Cognitive Disabilities, for what might work for one person with brain injury, does not work for another. There is no way that any Neurologist or government official can say what will work or what won’t and best practices can not come close to the complexities of each individual case. As Christof Koch, the chief scientist and president of the Allen Institute for Brain Science said, explaining some of the challenges involved in artificial intelligence design, “The brain is by far the most complex piece of highly excitable matter in the known universe by any measure. We don’t even understand the brain of a worm.”
I firmly believe and have suggested to lawmakers for years that all people with Cognitive Disabilities must be provided with a Social Worker or Case Worker, for that is an “adaptive device” most needed, a jogging partner, a short stop on your life team. I consider a computer, access to the internet, and IT assistance to be an essential adaptive device for me, yet this is not offered as a support service.
One of the most important, least expensive, most effective, long term ways to broaden public awareness of different disabilities would be the adoption of the new 4 part disability required signage, now being used by an increasing number of disability groups. These new signs would be phased in over a number of years and used for new construction or when old signs need replacement due to damage. Texas should lead the way, here is what it looks like:
We need a Texans With Disabilities Act to comprehensively, effectively, and timely address all the needed changes and improvements to disability services, regulations, requirements, and laws in the State of Texas. For example, as of now, there is no set protocol or understanding about how a state worker or agency must address a legal request for ADA Modifications.
Here are a few of the Bills authored in this session of the Texas Legislature to give an idea about legislation needed, which could be included in a Texans With Disabilities Act.
HB 2753 – Rep. Victoria Neave
Provide closed captioning at open meetings for all levels of government.
HB 3362 – Rep. Ana Hernandez
Relating to the consideration of ownership interests of certain persons with a disability in determining whether a business is a historically underutilized business for purposes of state contracting.
HB 3491 – Rep. Sheryl Cole
Relating to a sales and use tax exemption for taxable items used to assist persons with an intellectual, cognitive, or developmental disability.
HB 3351 – Rep. John Bucy III
Amend TEC 63.0013 to extend voting order priority to Texans with limited mobility by eliminating polling staff discretion.
HB 3352 – Rep John Bucy III
Expand and implement Collin County’s curbside voting plan across Texas.
HB 3769 – Rep. Yvonne Davis
Relating to the establishment of the coordination of disability services pilot program to review all state programs that provide services for individuals with a disability to determine any deficiencies in the programs; assist individuals with a disability in determining the services available and in applying for services.
HB 3774 – Rep. Yvonne Davis
Amend the Human Resources Code and expand the definition of abuse or exploitation of an elderly or disabled individual so that it is no longer solely based on an ongoing relationship.
HB 3775 – Rep. Yvonne Davis
Corrections officers must be fully trained before serving in an official capacity with individuals who are incarcerated.
HB 4125 – Rep. Celia Israel
Increase legal protections for people facing eviction.
HB 4462 – Rep. Terry Meza
Relating to the establishment of a task force to study issues affecting persons with disabilities in particular the barriers to accessing legal services for persons with disabilities, including communication, financial,
medical, and cognitive barriers.
HB 4469 – Rep. Terry Meza
The Texas Readi Act Relating to the establishment of a grant program and task force relating to disaster issues affecting persons who are elderly and persons with disabilities.
HB 4476 – Rep. Yvonne Davis
Create a civil liability for abuse and exploitation of an elderly or disabled individual.
HB 4483 – Rep. Yvonne Davis
Relating to peace officer education and training on individuals with disabilities. All aspiring peace officers must receive disability training as a requirement for graduation.
HB 3669 – Rep. Ryan Gullien
Relating to services provided to and collection of data regarding individuals with acquired brain injury.
That’s all for now folks, I am out of breath. I look forward to further dialogue with the Texas Governor’s Committee On People With Disabilities so that the lives of millions of Texans and their families can be improved.
Thanks for your consideration and commitment
Always my best