Dear Chair and Members of the Committee,
There are actions this Committee and the Texas Legislature can and must take to insure that hundreds of thousands of elderly, disabled, and low income Texans such as myself get the fair shake we deserve rather than being neglected, abused, and put at risk by dysfunctional social service support, rehabilitation, and legal protection programs and systems in Texas which are mandated to help, not harm us.
One of the most important Bills which needs to find authorship and passage in the upcoming Session of the Texas Legislature would initiate a study of and make suggestions to vastly improve the severe lack in Texas of adequate legal protection and advocacy as federally mandated for all people with disabilities and as well those legal aid services needed by low income Texans. The Client Assistance Programs and Legal Aid programs which the Texas HHSC refers clients to should be the subjects or particular scrutiny as they are failing to meet the demand and too often people with disabilities are critical of the quality of those services.
This lack of access to justice is particularly exacerbated by the skyrocketing number of complaints being currently filed against the Texas HHSC and its privatized Medicaid providers. A supervising attorney for Texas Rio Grande Legal Aid, Ms. Bernadette Segura wrote: “TRLA, and specifically the Health Law Team, have limited advocate resources. After the Medicaid system was privatized in 2012, the number of requests for our services in Medicaid issues greatly increased. To address the added burden this privatized system created for our clients and thus our organization, we have developed a priority system on how to take cases.”
Thus, rather than being able to address all the legitimate complaints it is receiving, TRLA has instituted a triage system which denies legitimate complainants the legal protection due. Another TRLA directing attorney, Jose Garza wrote: “The demand for (legal) services in the public benefits arena is particularly high. We have the equivalent of 1 attorney for every 15,000 eligible clients.” How is it that the Texas HHSC can still continue in good faith to give notice to the citizens it serves that they may turn to overwhelmed TRLA or CAP programs for legal assistance if an HHSC or Medicaid decision is objectionable?
If legal protection and advocacy was sufficiently available, my life, health, and well being as a 69 year old Texan with brain injury and visual disabilities would not be continuing to be at substantial and increasing risk and deterioration due to the many failures of the Texas HHSC, Medicaid Managed Care provider Centene / Superior Health, the Texas Board of Nursing, and other agencies, including the Texas Legislature and its Committees, as well as those Texas legal aid agencies mandated, but failing to protect those of us who are most vulnerable.
This is the third statement I have submitted to this committee in the past six months, having done so in April and June, as I also have to the Human Services Committee. Unfortunately, as one of the mistreated, neglected, and abused client patients featured in the Dallas Morning News series “Pain and Profit”, I remain now for 2 1/2 years without Personal Home Care Services (10 hours per week), without the corrective and protective prescribed eyeglasses vital to protect what remains of my sight in only one eye, without assistance of an HHSC promised brain injury rehab therapist, without the assistance of an HHSC promised Social or Case Worker, and other assistance it has been recognized that I need, including help with restoring drastically cut SNAP benefits, and also remaining without any legal representation, though I have made extensive efforts to find it. In fact, I am now making a third level appeal to the Texas Rio Grande Legal Aid Board of Directors over the refusal of TRLA to provide me legal assistance, as well as voicing my complaints of unprofessional conduct by at least one attorney at TRLA. Also in fact, the top ACLU Disability Attorney in the nation has agreed with me that my ADA Title II Complaint against the Texas HHSC shows many egregious violations of my rights, the ACLU will not represent me because I do not fit their targeted case work. Few people get such an honor. I have no Disability Civil Rights as mandated by current laws and Supreme Court decisions in this state or this nation.
Had it not been for a few days of volunteer help in July and August from out of the blue, I would likely to have already succumbed to the to filthy conditions which the neglect and abuse by the HHSC and Superior Health, caused and had left me in. I am far from being stabilized though and with no regular needed help, I feel as if I am headed back downstream towards the big waterfall again.
According to the vast majority of Disability Rights attorneys, including those on the American Bar Association’s Disability Commission, the # 1 obstacle to equality for people with disabilities is the lack of accessible legal representation, protection and advocacy which is federally mandated. Number One. Without this legal protection, our rights under the ADA, the US Supreme Court Olmstead and Endrews decisions, the Rehabilitation Act, and the Individuals With Disabilities Education Act are constantly violated with services, accommodations, and modifications to which we are entitled repeatedly denied us.
One suggestion I would make as a step to filling part of this gap as quickly and with as little taxpayer expense as possible would be for the State Bar of Texas to ramp up a Disability Rights Pro Bono program through its already existing Legal Services Division Pro Bono Department. However, I would also recommend that many all of the programs of the Legal Services Division, including the Texas Law Help, Lawyer Referral Service, Texas Lawyers for Veterans, be studied and improved. In general, I have found the Access To Justice Programs did not meet my needs as a person with disabilities at all and most in the disability community find adequate legal services almost impossible to get.
The # 2 major problem facing Texans with disabilities is the extreme lack of public understanding and awareness of what different disabilities are, the obstacles and needs they present, our disability civil rights. This public ignorance creates prejudice, which becomes a second disability. Too many people, businesses, local and state governments, especially the State of Texas and its Governor think and contend that Disability Rights Laws do not apply to them or to our state.
This Committee and the Texas Legislature should take actions to expand disability awareness training so that it is part of the norm for all dealing with or with responsibility for the disability community, including law enforcement, the court system, government and agency employees and administrators, educators, even staff and members of the Texas Legislature, and for the public at large. I would also encourage the expansion and passage of legislation similar to HB 2335 relating to requiring evidence-based trauma training for certain attorneys, court-appointed volunteer advocates, child-care workers, and child protective services employees and to extend that training to include the traumas of those of us with disabilities, especially the entire cognitive spectrum of disabilities. Those of us with cognitive disabilities suffer and live with far more traumas than almost all people realize and we really do need Social ad Case Workers to help us navigate and coordinate support services without being further traumatized and damaged functionally by an adversarial system of social services.
One of the most important, far reaching, cost-efficient, simple, and effective steps which could be taken to broaden public awareness of disabilities is to begin replacing the wheel chair only disability signage with one including more types of disabilities. The public perception has come to overly equate disability with being in a wheel chair. Unfortunately, signage is advertising and works its way into public perceptions so that one of the unintended negative results of the wheel chair only sign is that all to often the majority of citizens with disabilities, the blind, the deaf, and the cognitively disabled are told that we do not look disabled, which is a very damaging, even if unintentional prejudice. I would ask this Committee to research whether under federal laws, a state could use signage such as the image below to broaden awareness.
There is a saying among people with disabilities, “Nothing about us without us”. That includes the work of this Committee, its individual members, and the entire Texas Legislature. How many people with disabilities serve on the staff of this committee and how many are staff members of its individual members? If our community is not adequately represented in the actual workings of this Committee and the Texas Legislature, then those making laws, regulations, and exercising oversight are doing so without adequate advice, perspective, understanding, participation, or regular interaction with of the disability community. This Committee should research how disability employment in the legislature and state government could be improved. The more that people with disabilities are employed and interact with others in the work place, the more public awareness and acceptance is improved.
Other areas this Committee and the Texas Legislature could research and address is to be sure that caseloads of Texas State, Medicaid, and other social service Case Workers are small enough to provide adequate quality care. An APS worker who recently contacted me expressed the burdens of an overwhelming case load to me, and in fact not been able to follow up with me.
It is also important for this Committee to research ways to efficiently and cost effectively improve coordination of services among agencies to persons requiring multiagency services. In one way, having more individualized Social or Case Workers could help address this. Another idea is to have a Disability Services Coordinating Office, which did not run programs and services, but had the authority to coordinate them, attempt resolution with a program not serving a client adequately, refer problems to legal services on behalf of the client, and where the person’s data on file with the Disability Coordinating Office served as an application for federal, state, local, and ngo programs and services a client is eligible for. The savings of eliminating multiple intake and application administrative offices would go a long way to funding a single Disability Coordinating Office.
This Committee should also research how to fairly reduce excessive administrative demands for certification and assessments of need placed on people with disabilities, as these are not cost effective if required in excess or without alternatives. People with disabilities have already gone through extensive review and process to be officially determined to be disabled. We are under the ADA to be taken as the authority on our own unique disabilities and needs, and it becomes a form of double jeopardy if we have to constantly get a physicians letter, an assessment, or certification of needs which are commonly associated with our disabilities. Examples of this would be having to have certification for the ned of a service animal or animals, or the necessity of home internet access and basic computer equipment as a ramp to the world, or the need for help with visual or cognitive tasks. All of these are known to be essential, basic, commonly needed assistive necessities for people with disabilities, and as such should not be subject to additional layers of certification. Coordinating eligibility certifications and renewals could alleviate a lot of stress, energy, and time for persons with disabilities and administrators as well as reducing unnecessary costs.
There are some specific issues in my case I ask this Committee to review. One of them is my ADA Title II Complaint and Request for Mediation made to the Chief General Counsel of the Texas HHSC that I am being denied equal access to state programs and services as a person with cognitive and visual disabilities without the assistance of a Social or Case Worker I have long sought from the HHSC, and thus that is an equal access violation of Title II of the ADA. I contend that my ADA Modification request for a Mediation has been illegally ignored by the Chief General Counsel of the Texas HHSC. In addition, although the Chief General Counsel of the Texas HHSC promised in writing to be supportive of HHSC staff efforts to provide a Social Worker through Mental Health Programs, as such is not provided under Medicaid, the Chief General Counsel of the HHSC did exactly the opposite. Such abuse should not be tolerated from a person in an office of such responsibility. I think that this Committee should ask the Chief General Counsel of the Texas HHSC about this. An alternative dispute resolution system must be legislated to be part of the HHSC.
A significant part of the reason I have asked for a Mediation rather than pursue other HHSC grievance procedures is that these have failed me in the past and are very cumbersome to deal with. When I complained to the Ombudsman’s Office in @ 2015 that an organization providing the Client Directed Services program had taken me on as a client and then dropped me without giving cause, that complaint was kicked over to DADS and was never addressed or resolved. In 2010, I notified the HHSC Office of Civil Rights investigator who had made a determination against me in a complaint I filed, that a DARS official had given false or misleading information to the investigator by stating that a specialist (brain injury) would be provided for me and then almost immediately turning around and refusing to provide the promised service. Nothing was ever done about that. I got a lot of mistreatment by DARS.
If this committee would please ask HHSC officials specifically about their failures in my particular case, and how the HHSC proposes to remove what is essentially a blockade to the varied and vital services I need, have been approved for yet not provided, promised and not provided, and have long requested and never provided, it could save my life at this point. The neglect has become unmanageable and is creating too many collateral problems.
The HHSC must come to an umbrella resolution with me about an intermediary Social Worker as well over the diverse elements essential to my whole support services needs including the following: 1) how to address the more than 850 hours of PHC I was wrongfully left without by Superior MCO and the HHSC as well as replacing the ruined or unsanitary kitchen utensils needed as a result of that neglect of services , 2) how to provide me with the paperwork and record keeping assistance needed and long sought due to my visual and compounding cognitive disabilities, which have made that an impossible task, yet these records and paperwork are needed for the assistance programs I must utilize and other life demands, 3) how to provide me with the protective lensed eyeglasses supposedly available through Medicaid that I have not been provided, and 4) how to provide me with a brain injury, cognitive, other therapist and other professional help as promised but not provided, and the IT support needed as the computer and digital communications are my lifeline to the world. All of these are needed to assist in me in reestablishing a whole, simple, productive, and independent life in the community.
Though legislative staff have attempted to get my services restarted recently, the HHSC has only offered to address new assessments by Superior for PHC , which will not comprehensively address all my needs as a whole. As I explained in my previous statement to this committee, I can not negotiate over every single piece of my needed services, one piece at at time, that is too demanding on my ability,energy and time needed for other basic life demands. I have been characterized by HHSC officials to Legislative staff as refusing to get an assessment, when I have made it clear the PHC assessment by Superior Health the HHSC wants to pass the buck to does not and can not cover the umbrella agreement for coordinated services sought in my request for mediation nor can such an assessment address resolution of past broken promises by HHSC, which do not require an assessment to address with the HHSC. I am seeking services in a coordinated way with a PHC assessment being s step subsequent to an umbrella agreement through Mediation which the Chief General Counsel of the Texas HHSC is refusing.
I would advise this Committee that at the beginning of September, Investigators with the Texas HHSC Inspector General’s Office made an appointment with me and interviewed me regarding my case as reported by the Dallas Morning News. I also put on the record of their investigation various concerns about how the private Medicaid MCOs were likely charging for processes of no value to patients such as myself, but for which they were additionally well paid by the HHSC. I also put on the record claims that the nursing services provided by the private Medicaid MCOs fell short of the Standards of Nursing Practice of the Texas Board of Nursing. Excessive cost and poor quality is the name of their game. I have asked them for a copy of their completed report.
I expressed to them, and I believe this Committee should review, my opinion that Superior and other MCOs have encouraged people with disabilities, who became a large new consumer pool for them, to apply for Medicaid Disability Waivers, which in reality we were not likely to get, but for which the MCOs got paid nursing and assessment fees. If it is possible to find the number of applications and rejections for Medicaid Disability Waivers during the past decade or so, I think it will reveal a spike in applications when the MCOs took over, and a corresponding spike in rejections. Although my physician signed in the affirmative that I needed institutionalization or to be provided with Community Care services under Medicaid Disability Waivers instead, my application for waivers was denied because I do not need regular nursing care. How much did Superior get for putting me through this traumatic experience? Most people with disabilities do not need regular nursing care, but we do need habitation and other services available only through waivers.
I also expressed to the investigators my overall contention that RNs are responsible for executing many of the abusive actions of MCOs because the pressures of employment too often compel RNs not to adhere first and foremost to their professional standards, but rather to the demands of their employer. My complaints to the TBN of violations of the Texas Standards of Nursing Practice by RNs at Superior were mishandled by the TBN investigator, who never worked with me to produce an accurate affidavit which I could sign. One of my complaints was that I had been left in unsafe conditions without approved services by RNs at Superior in violation of the nursing standards. Although I asked the TBN investigator to come look at the unsafe conditions in my home created by lack of PHC services I should have been receiving, the investigator did not come. However, the DMN interview with me in my home clearly shows those unsafe conditions. In addressing the failures of Medicaid Managed Care services, this committee may have overlooked the lack of oversight and enforcement by the Texas Board of Nursing which has enabled too many of the abuses by Superior and other MCOs.
I also expressed to the investigators that when I was refused the Medicaid Disability Waivers applied for through Superior Health MCO by the Texas Medicaid Healthcare Partnership in @ fall of 2015, even though my Physician had signed in the affirmative that I need either Institutionalization or to be provided with Community Care Services through Medicaid Disability Waivers, there was no opportunity or notice given on how to Appeal that decision. The US Supreme Court Olmstead Decision mandates that people with disabilities not be driven to institutionalization by refusal to provide adequate support services to live independently in the community. The Olmstead Organization claims that no State in the U.S. can claim that it is fully compliant with Olmstead yet, almost 20 years after the ruling. I assert that my Olmstead Rights are being violated by the Texas HHSC.
I asked the investigators to note, as should this Committee: “On August 22, 2016, the United States filed a Statement of Interest in the case of Ball v. Kasich. In Ball,individuals on a wait list for home- and community-based services allege that Ohio’s ongoing denial of services has placed them at serious risk of institutionalization. The Statement of Interest clarifies that non-institutionalized individuals with disabilities who are not currently receiving state-funded home-and community-based services may bring a claim that a public entity has placed them at serious risk of institutionalization or segregation in violation of Title II’s “integration mandate.” The Statement of Interest also makes clear that a serious risk of institutionalization need not be imminent to state a valid Olmstead claim.”
I also advised the investigators that the only communication I have had from Superior MCO for essentially a year or so regarding my services has been recently, following my statements to the Appropriations and Human Services Committees in April and the DMN reportage in June. Superior asked if I would sign a blanket release of my medical records should the media request them. I declined and offered to approve such requests on a case by case basis. Superior is more concerned with its own bureaucracy than addressing my needs as a patient. I have received one robo call to update information, which I find unacceptable as Superior has agreed to communicate with me by email through a single consistent Service Coordinator, not a team or robo calls, through unencrypted email, which they continually fail to do in the constant rotation of staff.
So I reamin very much in need of assistance which I have been without for far too long, and I wish that members of this committee and the legislature would give more public voice to the onerous dysfunctions of our social service programs which afflict people with disabilities more than they help us. As long as legislators remain silent, they are complicit in the problem.
Thanks for your consideration and always my best,