Tuesday, November 17, 2015

STOP THE INSANITY!

Recently, a local woman told us that her child finally got on the Medicaid waiver for adults with developmental disabilities. They waited ten, long years. Ten years of caring for her child with no supports and services in place. They had to sell their farm. She and her husband can only take part-time jobs so they can care for their child. Even on the waiver, they receive only five hours of respite care per week. Ten, long years of waiting and selling their means of livelihood. 

And from what the Wyoming Department of Health Director told the Interim Joint Labor, Health and Social Services Committee in August, all individuals are being put on the Supports Waiver; even if they qualify for the Comprehensive Waiver. This has made it possible to get individuals off the waiting list at a greater pace. The committee seemed pleased. 

And when they were asked to introduce legislation to clean up current legislation, they were asked to strike language regarding the DD contingency fund because it has been de-funded and really no longer exists. No one batted an eye or asked what happened to the money. 

When individuals with developmental disabilities are denied the supports and services they require to have a quality life, it is simply unconscionable and unacceptable. Those of us who pay attention to news reports involving developmentally disabled individuals know that parents are overwhelmed and frustrated; and some have taken extreme measures. 

It is past time to stop the insanity! Those of us in the developmentally disabled community, from the highest functioning to the most profoundly disabled, must raise our voices in unison and demand that our state's fix their broken systems and provide timely, client-centered supports and services. It is past time to raise our unified voice at such a decibel as to drown out those so-called advocates whose demands are detrimental to the quality of life and safety of the developmentally disabled. There is no excuse for policies based on ignorance. Nor should we accept excuses for shortcomings in funding programs for the developmentally disabled. 

Wednesday, November 11, 2015

Change is in the Wind


The Wyoming Legislature adopted Chapter 104 of the Session Laws and established the Wyoming Home for the Feeble Minded and Epileptic in 1907.  The Legislators charged the State Board of Charities and Reform with the supervision and governance of the institution.  One hundred sixty-eight and eleven twenty-fourths acres of land were transferred from what was commonly known as the State Poor Farm to the Home for the Feeble Minded. The purpose of this institution was to “provide by all proper and feasible means, and intellectual, moral and physical training of that unfortunate portion of the community who have been born, or by disease, have become imbecile or feeble-minded or epileptic, and by a judicious and well adapted course of training, management and treatment, to ameliorate their condition, and to develop as much as possible their intellectual faculties and physical health, and reclaim them from their unhappy condition, and fit them as far as possible for future usefulness in society.”  This chapter goes on to set admission standards and funding.  In 1912, the School for the Feeble Minded and Epileptic changed its name to the School for the Defective.  Then, in 1921, the name was changed to the State Training School.
Wyoming voters abolished the Board of Charities and Reform in 1990 through a constitutional amendment.  The facilities, which had been overseen by the Board of Charities and Reform, were split among three departments; Department of Corrections, Department of Family Services, and Department of Health.  The Department of Health took control of the Pioneer Home, Veterans’ Home, Retirement Center, State Hospital, and Training School. Shortly thereafter, the Weston Settlement changed the population at the training school; excluding children and allowing adult individuals to transition to community programs.

Currently, an ICF-ID, (intermediate care facility for intellectually disabled individuals), the Wyoming Life Resource Center (WLRC or LRC), formerly State Training School, is “A residential community with therapeutic and medical support services,” providing “the least restrictive, most appropriate, most integrated environment possible with informed choice.”  

 Change is in the wind.

After an extensive study of the state’s health facilities in 2013, and possible closure, the Legislature decided to keep the WLRC open.  However, concerned with the cost of running the WLRC, the Legislature instructed the Department of Health to find ways to make it more efficient.  A Task Force was formed to determine ways to make all the state’s facilities more efficient in 2014.  After deciding that the state had no obligation or responsibility to provide long-term care for the elderly, those with mental illness, or those with intellectual/developmental disabilities or ABI; instead the state would provide services only as a safety-net.  And, as time wore on, the WLRC became the focus of their attention.

After changing the mission of the facilities, the discussion turned to which populations would be served and where.  Currently, the State Hospital (WSH) serves Chapter 7 (forensic psychiatric patients), Chapter 25 (civil commitments), geriatric psychiatric patients, and dual diagnosis (developmentally disabled with secondary psychiatric diagnosis). The WLRC serves the developmentally/intellectually disabled and individuals with acquired brain injuries.  The Retirement Center (WRC) serves the elderly and  some geriatric psychiatric patients.  The Pioneer Home is an assisted living center for the elderly.   The Veterans’ Home serves veterans.  The plans for the WRC, Pioneer Home, and Veterans’ Home have been put on the back burner, so to speak.  The scope has narrowed to only the WSH and WLRC – or more specifically, the WLRC.  The State Hospital will receive much needed capital improvement. 

The WLRC is the only facility in the state to be changed…and drastically.  In addition to services for the I/DD and ABI population, the WLRC will now serve geriatric psychiatric patients, and Title 25 civil commitments.  In fact, the projected beds for those Title 25 patients outnumbers the beds for geriatric psychiatric,  I/DD, and ABI combined.  The need to treat Title 25 and geriatric psychiatric patients at WLRC apparently stems from overcrowding at the State Hospital (a psychiatric facility), the growing number of civil commitments in our state, and the lack of psychiatric care providers in our communities. 

Despite the fact that the work of the Task Force is not complete and legislation defining the new missions of the facilities has not been enacted, the Department of Health is positioning for the change.  The superintendent at the State Hospital has been promoted to a newly created position of administrator over the State Hospital and WLRC.  The newly hired superintendent of the WLRC has a predominantly psychiatric background.  Recruitment of psychiatric nurses has begun and a nurse practitioner with a psychiatric background has been hired.  WRLC staff is assessing current residents to determine which fit into a dual diagnosis program; and which would benefit from transitioning to community programs, (even though current residents are considered “legacy population” and won’t be transitioned out of the WLRC).

In addition, the Task Force recommended an option that included elimination of choice.  Their reasoning is that the current statute is being abused by guardians that wish to ensure their loved ones remain at the WLRC instead of going to a community program or a nursing home; and that does not fit into the new safety-net role of the facility.  The Department of Health has proposed removing the statute which states, “No person shall be admitted unless an interdisciplinary team has determined that the center offers the recommended and most appropriate services in a least restrictive and most integrated environment consistent with informed choice.” 

Title 3 of the Wyoming State Statutes defines the powers of guardians; “Determine and facilitate the least restrictive and most appropriate and available residence for the ward,” and “authorize or expressly withhold authorization of medical or other professional care, treatment or advice.”  Is this statute enough to preserve the individual’s right to choose where to live and receive services?  Or will the elimination of 25-5-115(a)(iii) effectively make the Department of Health a pseudo guardian of those receiving services under the Behavior Health Division?

Yes, change is in the wind.  But will this change effectively put individuals at risk in less protective settings outside of the safety-net? Is the State of Wyoming defying the Supreme Court’s interpretation of the Americans with Disabilities Act in eliminating choice as well as virtually eliminating the only facility in the state that provides integrated, patient-centered care for the profoundly disabled? 

In their decision in Olmstead v. L.C., the U.S. Supreme Court stated, “This Court emphasizes that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings. Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” The Court went on to say, “The ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk. Nor is it the ADA's mission to drive States to move institutionalized patients into an inappropriate setting.”   With the projections for beds needed at WLRC for IID in the future, the new mission could essentially close the portion of the WLRC that serves as an ICF-IID.

Across our country, states are closing state-run facilities and sending vulnerable citizens to community programs or into for-profit facilities.  Even one death is one too many and there have been numerous deaths attributed to transitions.  Seventeen in Oklahoma within two years; seventy-six in Connecticut from 2004 to 2010; in California, forty-five deaths within one year of transition; at least two in New Jersey; in fact, this is troublesome trend has been noticed by the Government Accountability Office, who issued a report in 2008 stating that states should more thoroughly investigate deaths of the developmentally disabled receiving home-based or community services. How does this not prick our collective conscience?

Just three years prior to the Task Force’s determination, the WLRC celebrated its 100th anniversary. “You know, both the Governor and I believe there is no greater measure of any society than how you take care of the most vulnerable amongst you and they do it right here at the resource center.” Carol Mead said “I just hope they can continue what they do best, which is providing special quality, one on one care with people and taking care of them in the best possible way.”

In Wyoming, the original plan has morphed from keeping services for the profoundly disabled available to building a secondary psychiatric institution to relieve congestion at the State Hospital.  It is imperative that advocates remain vigilant over the next few months as the Task Force continues its work, and legislative committees meet in anticipation for the next legislative session.  We must continue to provide a voice for those who cannot speak for themselves.

REFERENCES

HathiTrust Digital Library:  1907 Wyoming Session Laws Chapter 104
http://hdl.handle.net/2027/nyp.33433007184777

HathiTrust Digital Library:  1921 Wyoming Session Laws Chapter 105
http://hdl.handle.net/2027/nyp.33433007184611

Asylum Project:  Wyoming State Training School
http://www.asylumprojects.org/index.php?title=Wyoming_State_Training_School

Wyoming Department of Health
http://www.health.wyo.gov/main/statefacilities.html

University of Michigan Law School
http://www.clearinghouse.net/detail.php?id=12489

County-10
http://county10.com/2012/06/21/c10-tv-wyoming-life-resource-center-celebrates-100-years/

State of Wyoming Legislature
http://legisweb.state.wy.us/InterimCommittee/2015/10-1019APPENDIXB.pdf

Lexis/Nexis
http://www.lexisnexis.com/hottopics/wystatutes/

Oklahoma Watch
http://oklahomawatch.org/2014/10/31/deaths-of-disabled-people-prompt-call-for-scrutiny/

Hartford Courant
http://articles.courant.com/2013-03-03/news/hc-dds-deaths-0303-20130302_1_developmentally-disabled-people-deaths-group-homes

McKnight’s
http://www.mcknights.com/news/deaths-of-developmentally-disabled-in-home-care-settings-should-get-closer-reviews-gao/article/112176/

United States Government Accountability Office
www.gao.gov/new.items/d08529.pdf

U.S. National Library of Medicine
http://www.ncbi.nlm.nih.gov/pubmed/9803129

NorthJersey.com
http://www.northjersey.com/news/two-deaths-in-privately-run-group-homes-stir-concern-in-n-j-1.1028426

VOR
http://vor.net/images/OlmsteadRedefined_final.pdf

Facilities Task Force Interim Report – Recommendations
http://legisweb.state.wy.us/InterimCommittee/2015/SHFTab4HealthMemorandum.pdf

Core Population Estimates
http://legisweb.state.wy.us/InterimCommittee/2015/SHF-1008APPENDIX6.pdf