It’s a Wonderful Lie

WA Action Alert

 

Once again, The ARC – Washington State has issued an Action Alert to advocates with inaccurate and unfounded information.  Is this another attempt to rile up advocates for those who have intellectual or developmental disabilities to go against one another rather than working together for the good of the whole? It is a wonderful lie, but it’s a lie.  That is not wonderful – it’s deceptive and harmful.

Please see this link for accurate information from both the Office of Financial Management and Memo from DDA Asst Secretary Perez re 2014 Proposed Supp Budget.  It is clear from both these documents that The ARC-Washington State is misleading our citizens.  I have written to both Sue Elliott, Executive Director and Diana Stadden, Policy and Advocacy Coordinator to indicate the source of their information for the extremely misleading Action Alert.  They have not been able to produce any evidence to support their claim.

 

Alert

Below is the text of The ARC – Washington State Action Alert

Arc action Alert for posting

Comparing the misleading information above which was sent out in a media blitz on December 19, 2013, the real information is below:

In light of these facts, Governor Inslee is proposing modest adjustments to the 2013 Supplemental Budget.  There is a very slight .7% overall increase in the DDA budget to meet these changes, which include:

  • An expansion of eligibility to Medicaid to individuals between the ages of 19 and 64, with income below 138% of the federal poverty level;
  • Funding for full time staff to perform preadmission screening, resident review, and specialized services (when needed) to Nursing Home clients in the Residential Habilitation Centers.
  • Reimbursement for developmental and autism screening will be added to the Medicaid plan to assure that children with developmental delays are identified as soon as possible.
  • Hiring of additional Residential and Community Services investigators of supported living providers in order to improve the timeliness of investigations, which will be funded through a certification fee.
  • The Vulnerable Adults Incident Tracking system (TIVA) which will be  funded through the Roads to Community Living grant.
  • Development of the Community First Choice option Medicaid waiver which would result in the state receiving an additional 6% federal match for services provided to individuals with developmental disabilities and the elderly.  The savings could be re-invested in additional client services.
  • Capital Budget—Funding added to the Capital budget to make infrastructure repairs at Lakeland Village and Fircrest School.

It certainly appears to me that there is support from our Governor to ALL people with intellectual and developmental disabilities – from the young children to the elderly, from those at home to those in supported communities.

Please, encourage The ARC chapters to support a continuum of care, support ALL people with ID/DD and do not pit advocates against each other by spreading false information.  In order to improve the situation, we need to work TOGETHER!

Please do write, call, email, fax Governor Inslee to indicate your support for working together for the benefit of ALL

Call the Governor’s office at (360) 902-4111

Send an email to the Governor at https://fortress.wa.gov/es/governor/

Post a response on Governor Inslee’s Facebook page at https://www.facebook.com/WaStateGov

(You must have a Facebook account. Be sure to tag your legislators.)

Send a tweet (text message of 140 characters or less) to Governor Inslee’s Twitter at https://twitter.com/govinslee

The Good, The Bad, The Economy

(Used with permission from author)

When ‘De-institutionalization’ Goes Overboard

Forcing the lowest functioning “into the community” is inexcusable
Published on October 29, 2012 by Louis Putterman, Ph.D in The Good, The Bad, The Economy

                My adult daughter suffered profound brain damage at birth due to a bungled delivery.  Had someone been on the ball and decided to deliver her by Caesarian section three hours earlier, she’d have had the prospect of a normal life.  Instead, she survived her birth trauma with cognitive abilities permanently akin to that of an infant, and with a panoply of medical complications that require her to be fed through a tube, have excess stomach fluids drained through another tube, wear devices to keep deformation of her spine and wrists in check, and receive numerous medications to control seizures and other problems.  I thought that I would never encounter anyone less worthy of respect than the obstetrician responsible for this negligence.

                But after decades of seeing to it that my daughter received the best care available, I encountered, a few years ago, a far worse evil: a threat to the lives of my daughter and others like her that is premeditated and makes no apology.  I discovered that a coalition of real estate developers, professional litigators, and advocates for higher-functioning cognitively impaired individuals had judicially kidnapped my daughter into a legal class composed of individuals they claimed to represent without their guardians’ consent.  And I learned that they had gotten a federal judge and the state of Massachusetts to sign on to a program of moving the individuals in this class into residential group homes providing far lower levels of medical attention, staffing redundancy, and programming than the specialized nursing home that provides for my daughter’s every need since she is incapable of performing even the simplest functions for herself.  I learned, finally, that what’s happening on institutional care in Massachusetts is part of a broad national trend.

When I and other family members of the patients in my daughter’s nursing home learned what was happening and told friends and members of our extended families, they were disbelieving.  How could anyone assert that moving such fragile and cognitively impaired individuals into smaller houses with less staff would improve their quality of life?  We all assumed that a mistake had been made and would be corrected once we brought it to the attention of the authorities.  That didn’t happen.  Our governor and secretary of state never answered our letters and phone calls.  The judge lectured us in his courtroom, telling us that we were ignorant and giving us no opportunity to respond.  The Department of Disability Services told us to wait our turns, that they would decide each of our children’s fates in their superior wisdom.  A state official hinted that if we offered too much resistance she would look into revoking our facility’s license.  I was personally told to mind my business because they had put my daughter on a list of those less likely to be moved, with no explanation as to why others like her were on the likely moving list.

 

My daughter lives in what is undoubtedly one of the top facilities of its kind in the world.  Licensed as a pediatric nursing home, residents who arrive before adulthood are never turned away as adults because there are no comparable facilities for adults like them.  They have in-house daytime activities every day, are attended to by certified nursing assistants, nurses, nurse practitioners, and doctors, are regularly visited by a variety of musical performers, and are taken on frequent trips to local outdoor and indoor sites in a fleet of wheelchair-adapted vans.  Most costs are covered by Medicare and Medicaid, and the non-profit organization owning the home raises additional funds to cover any gaps. 

Residents of this facility do not know, as you or I might, where in particular they live.  At best, they can sense that they are being cared for by individuals whose voices and touch they are familiar with.  There is a high level of continuity of staffing, as well as much redundancy, so that if one caregiver who knows my daughter well is ill or leaves the facility, others who know her equally well can fill in and help to train successors.  These nurses and nurse’s aides are walking, breathing angels who get profound satisfaction from caring for disabled individuals whom others would find it difficult to be among.  Amazingly, they can tell when new trainees are capable of the same caring attitude towards the residents, and they make sure that those who aren’t don’t stay.

A group home can afford only a small staff, often with high turnover and little redundancy.  Medical crises invariably mean a trip to a hospital, with attendant dangers.  Several patients transferred to small group homes under initiatives similar to the one facing our nursing home have died due to inadequate monitoring in the last few years in our state alone.  In one case, a patient with a well-known tendency to put dangerous objects in his mouth died predictably from choking not long after being moved to a group home.  The staff at his old institution had successfully protected him from this danger for many years.

 

What motivates the “de-institutionalizers” to inflict a hell offear and uncertainty on my fellowparents, insisting that they know better and that our children would be better cared for elsewhere?  Some are apparently imbued with an ideology which says that only “mainstreaming” and living “in the community” is acceptable.  It seems that if an individual could not live but could only die in a more “normal” community setting, such a death comes closer to their ideals.  But the explanation in most cases is less strange.  Developers and group home operators earn millions building and operating the homes mandated by the de-institutionalization legal settlements, and the lawyers concerned make a handsome living in the process.  It’s a business like anything else. 

The most disappointing part of the mix is the role played by organizations that offer programming to higher-functioning retarded individuals.  They’ve supported suits like the one that threatened my daughter and her fellow patients because they believe that taking government support away from residents of specialized nursing homes and institutions is the best way to increase the budget for their own programs.  They would sacrifice the most helpless to expand services to their preferred constituents.  Since my daughter cannot speak for herself, I have to do my best to make their stand better known.

 

http://www.psychologytoday.com/blog/the-good-the-bad-the-economy/201210/when-de-institutionalization-goes-overboard

 

DRW Validates Concerns regarding Safe and Quality care in the community for RHC residents

 

Mark Stroh, Executive Director of Disability Rights Washington (DRW) has written a letter to Governor Gregoire protesting her veto of Sections 7 and 11 of SSB 5459.  Even though DRW supported SSB5459, I am pleased to see their concern regarding the Governor’s veto of these two critical sections which were put in to assure safe and quality care for our residents. 

 

Without these two sections, there are no commitments to ongoing services, continued safeguards, quality assurance and independent oversight for the health and safety of our residents. 

 

Thank you to Disability Rights Washington for validating the concerns that we, as grassroots advocates for a continuum of care for our citizens, have been highlighting in our statements to the public and our legislators.