April 23, 2018
To the Texas House of Representatives Human Services Committee
Representative Richard P. Raymond Chair
Texas State Capitol 1100 Congress Ave.
Austin, Texas 78701
Sent via email to Committee Staff:
Citizen Statement submitted via ADA Accommodation For Hearing File
Re: Hearing on Interim Charge 2 – A Review of Managed Care In Texas
Dear Chair and Committee Members,
Thanks for your attention to my concerns regarding Medicaid and the negative impact managed care has had on me personally, the deteriorated quality of care, the cruel cost of that I bear as result, and the unnecessary costs that private, for profit, managed care organizations pass on to the taxpayers.
My concerns also include the failure of my managed care organization, Superior Health, to improve the coordination and quality of care despite my complaints to them as a person with complex disabilities.
The oversight by the Human Services Commission of my MCO has been very poor, needs many improvements, and in fact the HHSC itself has been disrespectful of my Disability Civil Rights, my condition and needs, and the risk to my health, safety, well being, and indeed my life as a result of HHSC failures and adversarial mistreatment of me.
I am a senior, native Texan, living alone in rural Llano County, trying to survive on Social Security payments of $750 per month (one third below the poverty level), with the Cognitive Disability of Brain Injury since 2001, and being congenitally blind in one eye with a hole in the retina of the other eye, Unless you have a Cognitive Disability, or have a close relationship with someone who does, unfortunately, no matter how hard you might try, this condition and its challenges are unimaginable to almost everyone, especially with my visual disabilities and poverty.
This pervasive public and systemic lack of understanding of Cognitive Disabilities becomes a second disability for those of us so afflicted. We all to often hear “but you don’t loo disabled”, and we are not likely to get the help we deserve faced with such prejudice ( See that attached mulit-disability logo which I feel would help alleviate this prejudice ). Not only that, but the normal systemic problems and adversity of trying to get help actually cause damage to the functioning of those of us with Cognitive Disabilities, create cumulative trauma and PTSD, leading all too often to tragedy. People with other kinds of disabilities do not have their disabilities made worse trying to navigate our inadequate, overly complex, and dysfunctional human services system, even though they might be treated unfairly. I have met so much systemic and other adversity in the past 17 years that although I desperately need help, I can no longer subject myself to the systemic abuse, it has done me too much damage. I feel like a woman who has been told that she should return to the home of her abusive spouse in order to put a roof over her head. I can no longer endure adversarial bureaucratic process which consumes much time and energy to only get a small crumb of the whole loaf of bread of services I need. I have been too abused for too long by the system.
When I hear talk of “cost containment”, I wonder if the cost of human pain and suffering is being included in that equation. Many of us are hurting physically, emotionally, and financially because it seems that “cost containment” is a higher priority than providing adequate, efficient, effective, and respectful social and medical services to meet our needs. We are not beans to be counted, we are human beings in pain. I am tired of being told that I, and others, can not be provided with adequate legally mandated services because our state and society can not afford to provide what are essentially my civil rights as a person with disabilities.
I have been left without the Personal Home Care I should be receiving for more than two years now, 1 1/2 years of that having been approved, yet none of those with the responsibility to make sure that I do not suffer from such neglect are doing a thing about it, including the Commissioner of the Texas HHSC, the Chief General Counsel of the Texas HHSC, Superior Health MCO, CDS in Texas, Disability Rights of Texas, my State Representative and Senator, and others. Overall, it has been impossible to get the health care and human services which are essential for me to continue to survive, even though those health and support services to assist me in living independently in my home as a person with disabilities are mandated by the U.S. Supreme Court Olmstead decision, which according to the Olmstead Rights Organization is not yet fully complied with by any state in the nation 19 years after it became the law, it is not just a Texas problem.
My request for a decade and a half to have the assistance of a Social Worker or Case Worker in navigating the system and other life challenges has not been honored, nor have I received help with mail, filing, and paperwork which is impossible for me to do adequately as I was once able, and which I have long asked for. The role of Social Worker or Case Worker is not and can not be fulfilled by an employee of my MCO because that would create a conflict of interest when dealing with problems with my MCO. In addition the structure and contract of the MCO can not provide other help needed from sources outside the tiny box of the system. I have been caught in between the HHSC which says such Social Work is to be done by my MCO, which does not do this, and even at times have claimed that they do not do social work.
If I had such a Social Worker or even my old DADS Case Worker, I would not have been left without PHC services for two years now. DADS workers usually assessed me annually by phone after their initial intake visit, the new service contract was in place that day or the next. On the other hand, Superior sends out a nurse each time, an all day expensive job, and can not compete the contract in less than a week and it has taken as
long as a month to get a new contract in place. That it neither cost effective nor quality service. Those of us with long term disabilities should not be subjected to over assessments, which are traumatizing to us and an unnecessary expense for taxpayers.
Superior Health has failed to provide adequate service coordination, has failed to communicate, has provided false information numerous times, has treated me rudely and without respect for my disabilities, has spent time on things it can bill the state for which do nothing for me, has failed to put service contracts in place in a professional and timely manner, and has failed to follow up for several years now on procuring the special protective lens eyeglasses I need to protect my remaining eye as well as correcting my vision. I can not trust them or any MCO to manage my health care adequately.
This neglect of me by RNs of Superior MCO, in my opinion, violates a number of Texas Board of Nursing Standards of Nursing Practice for all nurses per per Board Rule 217.11 including :
(1)(A)- know and conform to the Texas NPA and the board’s rules and regulations as well as all federal, state, or local laws, rules or regulations affecting the nurse’s current area of nursing practice.
(1)(B)- implement measures to promote a safe environment for clients and others o (1)(G)- obtain instruction and supervision as necessary when implementing nursing procedures or practices.
(1)(H)- make a reasonable effort to obtain orientation/training for competency when encountering new equipment and technology or unfamiliar care situations.
(1)(L)- provide, without discrimination, nursing services regardless of the age, disability, economic status, gender, national origin, race, religion, health problems, or sexual orientation of the client served.
(1)(P)- collaborate with the client, members of the health care team and, when appropriate, the client’s significant other(s) in the interest of the client’s health care;
(1)(Q)- consult with, utilize, and make referrals to appropriate community agencies and health care resources to provide continuity of care;
(1)(R)- be responsible for one’s own continuing competence in nursing practice and individual professional growth.
(1)(T)- accept only those nursing assignments that take into consideration client safety and that are commensurate with the nurse’s educational preparation, experience, knowledge, and physical and emotional ability.
Having filed a complaint against some RNs at Superior MCO stating such, the reaction of Superior MCO has been to cease communicating with me, and ceased professionally managing my Medicaid services though I am still officially a client. That could be viewed as retribution for filing a complaint.
It is 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.
The “team” Service Coordination practiced by Superior does not provide an adequate monitoring or provision of services needed by folks with multiple needs such as myself when frequently rotating, different team members have to read up on the charts before they can act and without an ongoing single case worker type relationship a “team” can not effectively address the nuances of needed care. Also Robo calls from Superior requesting that I do a health assessment may earn them a fee, but they do nothing for me at all and are irritating, especially when received in the evening hours.
In the email containing this statement to you, see the attachments of and ADA Title II Complaint and Request For Mediation, which I made to the General Counsel of the Texas HHSC and the replies. The General Counsel has essentially refused my request, responded with much faulty information, and made false promises about supporting efforts to provide me with a Social Worker through Mental Health rather than through Medicaid. Is it really acceptable to this committee and the citizens of Texas for such a senior HHSC official to make false promises to a person with disabilities whose needs are served by the HHSC?
I hope this Committee will investigate and monitor this situation, not only for my sake, but for the sake of all 3 million plus Texans with disabilities, approximately half a million or more with Brain Injury or Cognitive Disabilities, who are being less than adequately served by the HHSC. Disability Rights of Texas can not adequately protect our rights to such services when it is granted only $10,000 per year to do Brain Injury casework.
As for Medicaid funding and costs, it would likely be disastrous for me and all people with disabilities to change to block grant funding of Medicaid, the system is already broken and that would only make it worse. An article in Forbes magazine last year cited an editorial published in the New England Journal of Medicine (NEJM), which stated, “If Medicaid were shifted to block grants, funding that states receive to provide services would decrease.” It went on to say that with block grants, states would be able to dictate more who gets services and which services they get rather than having to provide certain services to specific populations. The article also stated that “States might also be able to put caps on enrollment in the programs, so that even people who are eligible might not be allowed to enroll. That’s a considerable threat to the 2 % in this country who are autistic, for example, or to the 1 in 4 adults who will at some point in their lives have some kind of disability, especially given the rates of underemployment and unemployment in these groups. States also could simply skirt requirements to cover behavioral health services, which are the key services that autistic people need. The upshot would be fewer people covered and covered people receiving less coverage.”
There are manly ways to improve services for people with disabilities, including better social work and coordination of services beyond Medicaid and dealing with housing, utilities, appliances, and other needs not addressed by Medicaid, see the attached Statement I made to the National Council On Disability last year which discusses some of those changes.
Please do not make the mistake that many do of saying or thinking that I am too intelligent to be disabled. Until his recent death Stephen Hawing was one of the most intelligent people on this planet, but without folks to bathe, feed, and care for him, his death would have come much sooner. It takes an incredible amount of time, energy, persistence, computer screen magnification, spell check, etc. for me to do this. It is a very substantial effort and my own needs are traded off to do it.
Thanks again for your time and concern I and so many others deserve better with your help
Jake Billlingsley
Llano, Texas
My Public Comment To The National Council On Disability – Feb. 23, 2017
https://llanojake.wordpress.com/2017/02/24/my-public-comment-to-the-national-council-on-disability-february-23-2017/
ADA Title II Complaint & Request For Mediation To The Office Of The General Counsel Of The Texas Health and Human Services Commission – July 31, 2017
To:
Maureen McCarthy Franz
Deputy Chief Counsel
General Law & Administration
Health & Human Services Commission
Sent via Email
Ms. Franz,
Title II of the ADA requires equal access to state programs and services for people with disabilities, and to such programs of affiliated organizations. Due to my brain injury and half blindness, it is extremely more difficult for me to deal with the multiple agencies I must deal with to try to put together a whole and workable support service program for myself. It takes me significantly longer to find, read, and deal with information and because of my condition, it creates far more anxiety, trauma, and exhaustion than it does for the average person or even for many people with other forms of disabilities. That is why I have asked for a multi-disciplinary social or caseworker to provide me with equal access to state, local, and other services for more than ten years, though one has never been provided..
The Texas HHSC Office of Acquired Brain Injury asserted to me two years ago that they were working with other state agencies to provide me with the social or case worker which I have asked the Texas HHSC to provide, yet nothing has come of that. The Texas HHSC can not turn over this request to a Medicaid MCO contractor who can not provide this service and must take the responsibility of complying with my request. Superior Helath MCO has failed repeatedly for two years to provide me with accurate information, respectful interaction, and with adequate service coordination. The Texas HHSC cam not expect me to deal with MCOs which do not adequately respect my condition, needs, and rights as a person with disabilities, and which have treated me in an unprofessional manner.
I have been without in home care for 16 months even though there is a current contract in place, yet no one has assisted in curing this, not the Medicaid CMO, not Texas HHSC, not Texas Voc Rehab, not my State Representative, not CDS in Texas, and not Disability Rights of Texas, my P&A agency which was representing me when asked all in June 2016 for assistance with getting a new attendant in place. To no avail I reminded all in the subsequent months that I was still without help.
I feel that this violates my Title II rights, drives me closer to institutionalization ( a violation of the Olmstead Mandate ), and deprives me of critical life services as well as assistance with becoming productive again as an agricultural professional ( a violation of the Commerce Act ). I would not be without in home care services now if the state had provided the social worker which I have asked for and which the Office of Acquired Brain Injury indicated would be provided. The state looks to the Service Coordinators at the MCOs to do this work, but they can not and have not. I am being batted back and forth between the two, and between various Texas State agencies in a manner which inflicts more damage on me and puts my life at greater risk.
There are collateral complaints and more detailed complaints involved with all this as well.
Therefore I request that the Texas HHSC provide me with the social or case worker I have long needed and asked for. I also ask the Texas HHSC to begin a timely, good faith dialogue and negotiation or mediation to resolve this long standing matter which is now putting my life at risk.
Your replay within 10 days is requested. I am seeking supporting letters in this regard from legal organizations and attorneys.
Please reply via email to accommodate my disabilities.
Sincerely,
Jake Billingsley
Revision – August 1, 2017
This complaint is not a complaint to the HHSC Civil Rights Office, which overly limits the scope of its investigations, it is a notice to the HHSC General Counsel’s Office of an intent to take legal action in regards the current and other associated violations. It is a request to pursue a resolution of these matters in a less litigious way and thus is not the business of the HHSC Civil Rights Office, but the duty of the General Counsel.
Since the federally mandated Protection and Advocacy is not being provided to me by the agency the State of Texas has designated to do that, I request that the HHSC provide resources to engage an attorney to adequately represent me in these matters as I am due.
I am asking that a Social or Caseworker be similarly provided.
I am asking that the brain injury rehab therapist trained in self employment be provided as promised, yet not provided.
There are other things I am asking to be done in this complaint , similar to my asking your office for ADA Accommodations, and these request are not the duty of the Civil Rights Office to address.
I look forward to working with you in good faith to resolve these issues, meanwhile I an reaching out to legal and other organizations for representation in a lawsuit or to write letters of amicus, concerns, and support.
This continues to put my life at considerable risk.
……………………………….
Note that all my legal ADA requests were denied by the General Counsel, who also made false promises of supporting HHSC staff who felt I could be provided, under Mental Health Programs rather than Medicaid, with the Social Worker I have asked for now for more a decade and a half.
Do lawmakers and society at large think that it is acceptable for the General Counsel of the Texas Health & Human Services Commission to make false promises to a person with multiple disabilities served by the commission?
Llanojake 