A Hospital is not a Home

Disability Rights Washington and Shawn Murinko have filed suit against the Department of Social and Health Services and the Health Care Authority as an effort to prevent other developmentally disabled Washingtonians from getting stuck in hospitals for months or years at a time, instead of receiving supportive services in the community.
There is one very critical piece of information missing from this article and the suit (unless it is buried in something that I have not been able to see) and that is the option of utilizing the state-operated Residential Habilitation Centers (RHCs) as an intermediate care facility for those who do not need the acute medical care provided in the hospital.
DDA denies admission, even short term, crisis respite, to many who request this service.  DRW and other paid advocacy agencies deny the choices of those who desire these types of pedestrian-friendly communities – often referring to them as institutions and unaware of the true communities and choices provided to the residents who call the RHCs their homes.
In recent years there has been more of a push to look at the RHCs as temporary (intermediate) homes for those who need extra supports than can be provided in a community home (SOLA, Supported Living, group home or family home) but DDA continues to refuse to honor person-centered planning for those who choose the RHC.
This refusal to allow people who request admission to the RHC is even more puzzling given the extreme crisis we have in our community homes.   In the past couple of years, at least 2 contracted supported living agencies lost their contracts (SL Start and Aacres Spokane) due to negligence and death of at least 2 residents.  These agencies provided “support” services to over 200 people.
Another recent situation concerned Kevin Alspaugh.   Kevin is 27 years old and is autistic.  He had lived at Fircrest (an RHC in Shoreline) for several years about 4 years ago.  He stabilized and returned to his home community in Bellingham and did great in a group home for the past 4 years.  Kevin then had some issues related to medication changes and became extremely agitated and his group home dropped him off at St. Joseph’s Hospital in Bellingham and refused to provide care any longer.  Keven basically lived in the SECU (Secure Emergency Care Unit) for months in isolation because DDA would not honor his family’s multiple requests to have him return to Fircrest for stabilization.
At one point, the hospital let Kevin leave, barefoot and in scrubs, and did not notify his family (mother is guardian).  Kevin ran over 2 miles at rush hour and across extremely busy arterials and found his way back to his group home.  When he arrived there, the manager called Kevin’s mother to notify her.  Kevin had bloody blisters on his feet and was lucky that he did not get hit by a car.  The police came and returned him to the hospital and the hospital requested that he be taken to jail – they did not want to care for him.  They told Kevin’s mother (guardian) that he has discharged himself.
Currently,  Miriam Hamilton (age 19) is living in the ER in Spokane and has been there since Memorial day with no end in sight.  Her group home refuses to take her back.  There is another 16 year old at Seattle Children’s who is living in the ER/Psych unit off and on for months unable to be discharged home  – every attempt at discharge in the past several months has ended in an ambulance ride back to Children’s within a few minutes to hours.   There is an 18-year-old young man “living” at Harrison Hospital in Bremerton.
I’m sure there are many others too.  Hopefully, DDA is at least tracking those in the hospitals now but the fact that we have space and trained providers at state facilities that could appropriately care for these individuals without restraining or isolating them is unconscionable.
It’s more than shameful that DRW and other paid advocacy agencies are not addressing this issue – they seem to be more concerned about their political issues and denying the choices of people than actually trying to create solutions.
I would be more than glad to have a conversation with you or provide you with more information on this very complex situation and also provide information on viable options and choices that could provide stability for these individuals.
We can do much better.

Recovered Wages for Caregivers

The Seattle Office of Labor Standards recovers more than $120,000 in minimum wage violations for Seattle home care providers

Below is the press release from Seattle Office of Labor Standards.  I do think the headline is misleading – it is not Seattle home care providers but only the caregivers who were employed by Aacres, WA, LLC – a for-profit supported living agency.  

you work for peanuts.jpeg

There has been a history of violations with this company – many coming from not paying their employees appropriately and understaffing with a high staff turnover rate and lack of nurse delegation services.

Aacres,, WA LLC had at least $40,200.00 in civil fines for several violations of care between June 11, 2018 and October 17, 2018.  Many of these violations repeat violations cited in previous investigations in the past year.

 

Seattle – (January 25, 2019) – The Seattle Office of Labor Standards (“OLS”) announces a $120,050 settlement with Aacres WA, LLC, a company that provides supportive living services to people with developmental disabilities. The OLS investigation found that Aacres failed to pay the correct minimum wage for 377 employees who worked or attended trainings in Seattle throughout 2017.

Alexander Njuguna is one of the workers benefiting from the settlement. “I am excited that we will get the money that is owed to us. There are so many workers over the years who complained about the injustice we faced. Being compensated will be good for all of us and reminds us that if someone does you wrong, and the law is in your favor, there can be justice. I would like to emphasize that all employees have rights and an employee should not be afraid to raise concerns in fear of retaliation by the employer.”

SEIU 775 represents more than 45,000 long-term and home healthcare workers in Washington State and Montana. “Thousands of SEIU 775 caregivers working in Seattle care for individuals with developmental disabilities in home care and supported living. Our Union works closely with employers and advocates to ensure that caregivers are treated with dignity and respect. Yet, in some cases, caregivers like other workers, aren’t treated fairly and aren’t paid what they are owed,” said Sterling Harders, SEIU 775 President. “OLS’ work to hold Aacres accountable and their fight to ensure no employer gets away with wage theft has a positive impact not just on our city’s workers, but on the level of care received by people with disabilities.”

Aacres recently announced that it was closing its King County operations after the Washington State Department of Social and Health Services cited them for serious deficiencies in care standards. A sister company, SL Start & Associates, was also shut down for violations of care standards. Aacres is a subsidiary of Spokane-based Embassy Management which is owned by a nationwide company, U.S. Community Behavioral, and New York-based private equity firm, Bregal Partners.

Please visit the OLS website for more information on Seattle’s Minimum Wage Ordinance and other labor standards.

Below is an excerpt regarding the recent (April 2018) de-certification and closure of SL Start Supported Living Services:

SL Start and Aacres are both owned by the same company—Spokane-based Embassy Management. According to business filings in Washington and Delaware and news reports, Embassy Management is a subsidiary of U.S. Community Behavioral, which in turn is owned by Bregal Partners, a New York private equity firm.

Don Clintsman, the deputy assistant secretary of the Developmental Disabilities Administration, said he understood the concern about moving clients to a sister organization, but said the two entities are different.

“The expertise that Embassy has shown and that Aacres has shown in running a supported living program give us confidence the SL Start residents will get the right service,” Clintsman said.

Excuse me – what EXPERTISE did Aacres have in running a supported living program?

Were the violations that had been accumulating mean anything to DDA?

This must STOP

A mother who sought help for her son was taken under the wing of a local Arc Chapter.  They promised her that he could be moved from the RHC to a community home near their home community.  This mom believed them, because why wouldn’t one believe that The Arc would advocate for her son with developmental disabilities – isn’t that what they are supposed to do?

Margaret believed and The Arc provided.  Margaret testified to our legislature that she supported SB 5459 and at the time, she did and believed it was about choice.  Then, she started to see some inconsistencies during a retreat for advocacy training.  She said that she would not testify again because she didn’t believe them anymore.  These “advocates” stopped supporting her, turned their backs on her and her son and her life has become a living hell.

She was not allowed to visit her teenage son without giving at least an hour’s notice to the home.  Then she noticed that her already thin son was losing weight, his skin ashen and his eyes dull.  She complained that the written menus were not being followed and there was not adequate food in the home.  There were other problems too – not only with her son but with the other residents.  The mom took her son to the pediatrician that he had seen almost his whole life and then the boy was taken to the hospital.

This is where the story takes an even more sinister turn – CPS was called – not to investigate the allegations that she had against the group home but against her.  Her son was removed from her and taken to an undisclosed location.  She had to go to court and lost total custody and is only allowed supervised visits.  Last night the CPS case worker “forgot” to take the son to meet his mom, she tried to call the home, the CPS worker and DDD.  No one answered the phone and she had no idea where her son was.

We have written letters to all legislators in Washington and to MaryAnne Lindeblad.  Ms. Lindeblad immediately responded and told me that this would be investigated.   I attempted to get through to Disability Rights Washington but they were not responsive.  I filed a complaint with the Office of Family and Child Ombudsmen regarding alleged false accusations against this mom.

I am very glad to say that we do have some extremely strong legislators who have integrity and they are working to help this family reunite.  We can not thank them enough for their continued support and work for our most vulnerable citizens:  Representative Sherry Appleton, Senator Maralyn Chase, Representative Maureen Walsh and Senator Pam Roach are heroes in our eyes tonight.

This is very unfortunate that The Arc will not support anyone that does not agree with their platform.  Not only will they not support you, but in this case they have actually done great harm.  This mom now knows that community is not always best and she wishes she had never listened to their “lies and trickery.”

This is not ADVOCACY at all – this is abuse and it needs to stop.

 

 

Deinstitutionalization – Risks now outweigh Benefits

More horrible budget news today and I really don’t know what to say – how much more can we take?  People are already dying due to this crisis and the plan that Governor Gregoire put out today guarantees that more of our precious loved ones will die.

I am also continually shocked by the misinformation that our Governor is basing some of these disastrous decisions on.  Most notably is the false information that closing our Residential Habilitation Centers (RHCs) will save money.  The reality is that this will cost more money and more lives.  We have already experienced this in the process of closing Frances Haddon Morgan Center this year.

There has been one documented death so far.  There have been several injuries to residents and many of the residents who have transferred from Frances Haddon Morgan Center to Fircrest are experiencing difficulties.  It’s not only the residents who have transferred but the residents who were already living there are experiencing increased anxiety and behavior issues.

I cannot imagine what many people who are living in community homes must be feeling – fearing for their lives with no safety net there for support.

I have attached a chart which documents true costs of care in a variety of settings.  This data is taken from the DSHS EMIS report for December  2009 –  Dec 2010.  The data for the Supported Living Programs is taken from the Certified Residential Care Cost Reports that each agency must submit every year to DDD.  These are the 2010 reports.

Some very interesting data is clear:

The RHCs are THE MOST COST EFFECTIVE and COMPREHENSIVE care for some of our most vulnerable citizens.  This chart does not even include the cost of food, healthcare and most habilitation services for our citizens with disabilities.

Take a look and see – let me know if you have any questions.  Cost of Care Measure

Opinion published in The Stand Risks of Deinstitutionalization now outweigh benefits

It is also interesting to note the profits that many of these agencies make.  It would be great to use some of that money for improved services to more people.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper

When I read this article and see no mention of SSB 5459 in this – I realize that the bill that was so critical in my mind was of little significance to the state as a whole.  I have a hard time coming to grips with this and then wonder, if this bill was of such little significance, why didn’t legislators listen to the sensible and responsible facts that were brought to their attention and vote NO on SSB 5459?  There must be another reason that overrode responsibility, basic human and civil rights, personal choice on residence as guaranteed under the Federal Olmstead decision and the Centers for Medicaid and Medicare Services guidelines.

If anyone could enlighten me as to what deals were made which caused this bill to pass I would love to know.  Maybe if I understood what was exchanged in order for a responsible, humane and sensible person to vote yes on this bill,  I could understand why innocent people were made scapegoats for such an “insignificant” bill.

Local News | What did and didn’t pass in Legislature this year | Seattle Times Newspaper.

Stop thisTrainwreck waiting to happen!

Please stop SSB 5459 – There is so much wrong with this bill that it will be hard to sum up in a concise and effective letter.  The critical issue is to stop this now and think about what the ramifications of such drastic changes will be if this bill is passed.

  1.  This bill is based on regurgitated false information from years past.  Senator Adam Kline continues to talk about “the 1970’s” with regards to our facilities today.  He is correct about the changes that needed to take place in 1970 but he’s far removed from the realities of the situation today and the recommendations from the experts of TODAY
  2. There are many in the community who are eligible and have requested admission to an RHC.  DDD has continually denied admission.  This is the only reason for a declining census in our RHCS.  There needs to be a survey sent out to all in the community who are eligible to inquire about their choice.  I believe you will find many who have chosen the RHC but their choice has been denied.  It is time that DDD actually supported and adhered to the Olmstead decision and respected people’s civil right to have a choice in where they want to live.  This is the very first thing that should be done before any or our RHCS are consolidated or closed.
  3. The reports that are generated by DDD are based on false information.  These need to be scrutinized.  I have researched the data and have found so many errors and flaws in the analysis of that data.  It is incredible that these reports are continued to be passed around as “fact” without anyone in the department questioning the concerns that I have raised.
  4. Rather than answering my letters regarding the fact that the “key points” are not supported by the data, DDD ignores the questions; Executives from The Arc accuse me of being “abusive” for questioning these reports.  As any person who has done research would know, it is expected to have people question your work.  When they question you, it is an opportunity to prove your point – not to call the questioner ABUSIVE.
  5. DDD reports that they have a Quality Assurance program which is up to date.  I will be sending  a synopsis of the issues I have had in researching the QA reports that should have been done, that DDD says they do, and the lack of knowledge about where they are, if they were even done and the multitude of players involved who do not communicate or know who has what report.  It’s a huge issue of “passing the buck” and nothing is getting done.  This NEEDS to be addressed before anything else can move on.  How can DDD say they have quality assurance when they don’t even have reports done, completed or available or even know who does them? DDD has not even complied with the requirements of The Roads to Community Living grant by completing the necessary surveys of the people who have participated.  The whole grant could be in danger without DDD following through with the requirements.
  6. People contacted regarding QA – still no data available – these people just keep sending emails around saying the next person has the data.  No one has it.  Players involved in this game:  (12 names which I won’t post here but sent to our House Ways and Means Committee members)  You would think that one of these people would be able to give a straight answer.  It’s time that DDD and the DDC are held accountable for their actions and lack thereof.
  7. DSHS is focusing their efforts on closing the RHCs.  The RHCS are about the only safe place for our citizens with DD.  The community homes which DDD so proudly talks about are a shambles – no safety or QA oversight, poorly trained staff with a high turnover, inadequate staffing levels and this is just the beginning.
  8. We hear about how wonderful the homes are in the community.  Just this past month I have been told by family members who have a grown brother and a 17 year old son in an Alpha Supported Living home and a SL Start home respectfully that they are not allowed to bring a visitor to the house.  What type of home is it in which as a sister or mother (or other family member) cannot even drop in to see their loved one or to bring a visitor to meet with them?  Why would they have these policies?  This is certainly not a home in which I would place my loved one. At the RHC, I can visit whenever I want, I don’t have to pre-arrange a visit, I can bring whoever I want to visit with my son.  There are no restrictions on my visitation with my own son.
  9. Rather than embarking on projects that are experimental and also on successful programs with people who are happy with those programs, it is time for DSHS and DDD to fix and bring up to standard the issues in the community.  This is where the energy and money needs to go.  These advocates talk about how they support those in the community yet their actions are contrary to that.  The problems with abuse, lack of oversight, lack of trained caregivers, and lack of services in the community will only be compounded by passing SSB 5459.

Please for the sake of not only our most vulnerable citizens who are safe and healthy in their current homes but also for all those in the community who will be hurt even more by the changes  that this bill support, DO NOT PASS SSB 5459.

My Son Cannot be Cured!

As a healthcare professional, parent, citizen and disability advocate, I still do not understand the position of DSHS, DDD and prominent “advocacy” groups such as The Arc Chapters, People First and others.  These groups seem to believe that if you keep spending money and services on people with disabilities, they will become normal, function as normal and be productive as normal.  For some people this may be true and for those people I am very supportive.

There is another side to the story though – there are many of our citizens with disabilities who will never be able to be on their own, have a job with a competitive wage, own a house, cook their own dinner, or drive a car.  And you know what – they probably don’t care and wouldn’t even consider those things as part of their life – and that’s OKAY!

My son is one of these citizens.  He’s not normal, will never be normal, has no desire to become normal (he doesn’t even know what that is anyhow) but this in no way diminishes his worth as a beloved human being.  He is absolutely perfect the way he is.

In addition to his incredible worth as a human being, my son is about the happiest person that you will ever meet – he finds joy in so many aspects of life and just thinking about what brings him joy, brings me and all who know him joy.

I believe that if someone wanted to spend the millions of dollars on him to try to train him for a “real job” or to try to make him feel like he’s part of the community; they are wasting everyone’s money and time.  Not only that, they would be irritating him since he is totally incapable of fitting into a “normal” type of life.  I’m tired of people telling me that “if only he had the right supports he could do normal things” – he’s perfectly content with what he can do and works at his pace learning new things that matter to him.  Why can’t society let him live his life rather than trying to make him fit a mold that is beyond his capacity to fit?

Also, as a health professional, parent, citizen and disability advocate, I would much rather see the public funds that are overspent on trying to get people to be normal, spent on more productive services – think of the good that could come to the whole society if these dollars were spent on education, health care, public services that benefit more people than just a few that will never be able to live up to the expectations of “normal?”

I do believe in disability advocacy but this movement has gone way too far in trying to overcompensate.  It’s time to swing back to sanity now and realize that there is a continuum of abilities and that we need to honor and cherish that.   We seem to accept everyone else for who they are, why can’t we accept those with profound disabilities for who they are too?