Shame on Frame – King 5 “Investigative” report

Susannah Frame is doing a great disservice to our community. Her total lack of appreciation for the diversity of our population of citizens with intellectual and developmental disabilities is more than problematic.   Without an understanding of this diversity one cannot even begin to understand the complexities involved in the care of our community members.  Below are some bullet points that need clarification from Ms. Frame:

  •  mentioned several times about biases in the “scientific studies” but fails to mention what those biases are.
  • refers to cost of care being less expensive in a community setting – but she has not explained what “cost of care” is or how it is measured.
  •  has not shown any indication that the cost of care is higher for those with higher support needs.
  • refers to the families who have had their loved ones in the RHCs for 20-30 years and are afraid – unaware that there are many young people who live in these therapeutic communities and many more who were denied this care.
  •  has not offered any solutions or real alternatives or how those alternatives could be achieved.
  •  seems unaware of the crisis in our community care system with so little oversight that many fear for their health, safety and lives in these community settings.
  •  has not addressed the issue of access to care in the community such as medical care and transportation.
  •  has not spoken with any of the agency service providers in the community about their inability to staff and appropriately care for an influx of people with very high support needs.
  •  has not addressed what a person’s community is and personal choice in making that decision.

If one is going to talk about de-institutionalization without addressing safe and appropriate supports in the community, this type of advocacy endorses neglect and risk for our most vulnerable citizens. The environment that is the Least Restrictive for that Person is the environment which allows that person to interact with and be part of the community to their fullest potential. As stated in the 1999 US Supreme Court Decision of Olmstead, for some that may be the institution.

The issues above need to be addressed and discussed in any conversation dealing with care of our loved ones. The answer is not arguing  “institution vs community” – the answer is to look at  the diversity of the population and understand their needed supports and then how to fund and maintain those supports.

“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence.”  John Adams

Cost of Care

Yes, it is absolutely correct that DSHS costs for care in the RHC is greater than DSHS costs for care in a community setting. Looking only through the eyes of DSHS it would make sense to close the RHCs to save DSHS funds – but looking at the big picture of how things work that is exactly the opposite of what one should do if cost was a factor. .

Cost of care is one issue discussed  – but not what “cost of care” means for each setting nor the support needs of the residents in each setting.  The graph below is a good example of missing costs – but necessary costs for care.  Looking at the cost breakdowns for areas of care, it is clear the RHC provides a much more comprehensive package of care than the community settings.   The greatest cost of care in community settings is the personal care cost and for people with higher support needs, that personal care cost is extremely high as evidenced by the data from DDA.

RHC and Community Cost

All of these are included in the RHC Cost

Where are they in Community costs?

Other Costs

Resources:

Developmental Disabilities Administration. (2012). Cost of Community Clients with High Support Needs.

(2011). RHC Cost Details and Federal Reimbursement – CMS.

Community Cost of Care Reports, Public Disclosure Information Revealed. (n.d.). Retrieved from http://www.becausewecare1.com:https://becausewecare1.com/community-cost-of-care-reports-public-disclosure-information-revealed/

Clintsman, D. L. (2011). Assistant Director, Department of Social and Health Services. 30 Community DDD Residents – highest costing to DDD.

Atkinson, M. (2011). DSHS: Developmental Disabilities Services Overview. Office of Program Research and Senate Committee Services, Joint Legislative Task Force. Retrieved fromhttp://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/DevDisabOverview.pdf

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved fromhttp://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pd

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities:http://www.siswebsite.org/cs/SISOnline

Division of Developmental Disabilities: Intake and Determination of Developmental Disabilities. (n.d.). Retrieved from Washington State Legislature: http://apps.leg.wa.gov/WAC/default.aspx?cite=388-823&full=true

(Data taken from Certified Residential Program Costs of Care Reports for 2010. The agencies from which data was retrieved:

Aacres WA, LLC – Tacoma Aacres WA, LLC Abbott House –  Alpha Supported Living – Ambitions of Washington – Region 4 Ambitions of Washington – Region 5-  The Arc of King County – The Arc of Spokane –  Bethesda Lutheran Communities Camelot –  Centerpoint Services –  Community Alternatives for People with Autism –  Community Homes –  Community Integrated Services –  Community Living – Bellevue –  Community Living – Kent/Auburn –  Community Living – Kent Intensive Community Living – Sunnyside –  Community Living – Yakima –  Destiny House –  Educational Programs in Home Living –  Friends of Families –  Friendship House –  Group Action for Peninsula People –  Harbor Alternative Living Assoc. – Inglewood Residential Services –  Integrated Living Services –  Kitsap Residences –  Kitsap Tenant Support Services –  Life Skills Center –  Maksu, Inc –  Premier Care Services –  Provail  – Puget Sound Regional Services –  ResCare –  Shamrock Living Services –  Shared Journeys –  SL Start – Grandview –  SL Start – Seattle –  SL Start – Spokane –  Stand Together Total Living Concepts (2010)

Face the facts

Knowing that more budget cuts are coming down the line it is really time for our legislators and advocates to face the facts.  We’ve listened to the rhetoric long enough and many have come to believe what they have heard –  – but the truth has been misinterpreted too long.

When looking at costs for those with intense support needs we need to look at the costs for that population – not the average of the whole.  These costs are dramatically different.  We can all figure out very easily that when people share costs, the individual costs decrease – this is very simple to understand.  Yet, when we are talking about sharing costs for those with developmental disabilities, this simple fact is totally ignored.

I do not hear any advocates saying that someone is “too disabled” to live in the community and I also do not hear the cost of those with intense support needs who choose to live in a community setting.  So-called advocates do not want this talked about but a few of them have slipped out what their sons and daughters have cost our state to allow them the choice of community homes. Everyone should have the choice but also let’s be honest with what these choices cost – not only to the state but the individual themselves, their families and the local cities and communities.

1.  One young man was able to live in the community with the help of 19 hours of nursing care a day for 17 years.  His situation is talked about frequently to illustrate that those with high medical support needs can live in the community but the fact of his state funded 1:1 nursing care is never mentioned.

2.  One young woman lived in a group home for a couple of years until it closed.  She has lived in the intermediate care facility for about 5 years now and is getting ready to move out to a community home of her own.  Our state has spent over $150,000 sound-proofing and remodeling this home that she will live in by herself – and two staff people 24 hours a day.  She will have a male and a female staff person each of the 3 shifts 24 hours a day every day of the year.  Her staffing costs alone will be over $265,000 a year.  This does not include any other costs for her care in the community.

I understand these are two extreme examples but they are real examples of the level of care that those who live in the intermediate care facility could require if they chose to live in a community setting.  When we are talking about downsizing the ICFs we need to look realistically at the costs and they will be astronomical if we even consider safe and appropriate care as a human right.

These are the types of costs that we need to look at when hard choices are made regarding state funds for where those funds will be applied.  I will argue that denying those who choose the ICF/ID as their home not only denies that person but costs everyone in our state.  The costs are not only dollar amounts but costs of quality of life – quality of life for the person, their family and our communities.

It’s time to face the facts and get real about the situation.  Let’s stop the pretending – the pretending is certainly not beneficial to those we are trying to help.

Who really is accountable?

Recently I have been involved in advocating for a young woman to have admission to the Intermediate Care Facility (ICF).  She was on a respite stay at an ICF recently due to an issue in the private home she had been living in – one to which she could not return.  During this respite stay she requested admission to the ICF near her home and family. Admission was “denied” and her guardian was told if she stayed in the ICF for 90 days, she would be eligible for the Roads to Community Living grant and could find a home in a supported living arrangement.

The young woman went home with her mother for transition to supported living.  The problem was that there were no supported living homes available.  Only one agency thought they could accommodate this young woman’s needs and promised much more than they could deliver.  During this “transition” time, one “promise” after another was broken – from issues of roommates, to appropriate room (it was suggested that the bed set so it was partially in the closet – the only arrangement in which a bed would fit in the room), to unsanitary conditions which could lead to health problems for the residents, to no staff able to take this woman out to her frequent community outings.  This obviously was not a safe placement  – yet it was the only one available.

It was at this point that I ran into this young woman at the grocery store  –  what a coincidence!

In the telling of the story, I asked her guardian about the Planned Action Notice, the required written documentation of decisions made by the Developmental Disabilities Administration – the  first step in asking for an appeal.  Without this written notice, an appeal cannot be initiated.  NO written denial had ever been sent – did the Admission Review Team really meet and did they really deny admission?

The guardian requested a copy of the written documentation (which would have been sent 2 months previously) It did not materialize but what did happen was the guardian received several harassing, abusive and threatening emails from the young woman’s DDA Case Manager.  I am not surprised that the documentation was not there but I was surprised by the written threats and harassment the guardian received.

This scenario is a scenario that many advocates are aware of.  The abuse of the rights of our vulnerable citizens.  Decisions are made without going through the legal process and therefore there is no written documentation of the requests for admissions to the ICF.  We hear that no one is denied and we know this is not true.  The reason that the “official” record says that no one is denied is because these decisions are made in secret, are not documented, the decision is not written down, a Planned Action Notice is not sent and the person has no opportunity to appeal.

 

This is unlawful and violates the legal rights of many of our loved ones.  When will this practice be uncovered and when will the department be accountable for not following their policies and the laws of Washington State, let alone the Federal Government?

A Gym Membership?

Community members playing in the open field

Community members playing in the open field

 

If you cared for a young man with autism and moderate intellectual disability with the following other issues, would you consider a gym membership as an appropriate solution to his need for physical activity?

  •  significant deficits in communication, social interaction, relationship development, coping skills, long-term planning and executive function.
  • He is physically active and energetic with running, jumping and constant movement.
  • He is very high energy and needs to be constantly engaged to minimize behavior issues.
  • Communication is impaired due to his frequent need for physical activity sensory stimulation.
  • He enjoys swinging for up to 20 minutes, long walks, jumping, etc.  and sensory stimulating sounds and movement activities.
  • At times he needs staff to contact guard him due to his behavior to dart away when he sees something off in the distance which interests him or he may push and run into others.
  • He is not traffic safe

I ask this because this is a solution that has been offered to a family from the Roads to Community Living Team.  This young man currently lives in a supportive community in a campus setting.  The campus setting is ideal to benefit this young man in his physical activity needs and also for his safety.  The Developmental Disabilities Administration (DDA) wants to move this young man from the supportive community in which he is stable and safe to a dispersed home.  The family has requested he remain in the current community and their request has been denied.

The fate of this young man is now at the administrative hearing stage.  DDA has come up with some solutions under the Roads to Community Living program, to help with the transition.  One of these solutions is a gym membership (remember the RCL program only lasts for 365 days).  Do you think the gym membership is a solution to the physical needs of this young man?

If so, why?  If not, why not?

 

Please Listen to Us!

I am attaching some very interesting documents.  What I would love to know is if the Department of Social and Health Services and The Department of Developmental Disabilities are listening to the people they are serving.

To me, from looking at the Joint Legislative Audit and Review Committee (JLARC) DDD Assessment Report dated January 31, 2009, it clearly outlines the numbers of people and the programs and services requested.

JLARC Final Report 013109 DDD assessment

This is what I find very interesting and confusing:

Program Requests:

ICF/MR – 20

Roads to Community Living – 1

Service Requests:

RHC or ICF/DD services – 40

Roads to Community Living – 1

Looking at what was requested by the people, it is clear that the people are requesting the ICF/DD services much more than the Roads to Community Living Services.  Why then, is the Department downsizing the ICF/DD’s and putting thousands of dollars into the RCL program?  Why is the State of Washington spending over $250,000 on a “Family Mentoring Project” for the Roads to Community Living when it is clear that the people involved are not even asking for this? Is this being a responsible steward of our public funds? Is this being cost effective?

It is time to listen to those who really receive the services and programs – not those who masquarade as their advocates.  The people have clearly spoken and they are asking for the services in the ICF/DD’s.

Please Listen to Them!

Number of Programs which DDD Clients Access:

Number of progrmas which DDD clients access

Other DSHS Services Received by DDD Clients:

Services Received by DD Clients in FY 2008

What is The Arc of King County afraid of?

If the health and welfare of our most vulnerable citizens was not at stake over these issues, I would actually find the petty and childish behavior of the “Advocates” funny.  Who are these people and what is their agenda?  I’d really like to know because they certainly to not advocate for the same people that I and other people in grass roots groups do.

Are they afraid of people questioning them and possibly finding out the mismanagement of our public funds that has cost us MILLIONS?

1.  They are not “Advocates” for our most vulnerable citizens – in fact, they are quite the opposite.  Hearing the cheers and congratulations for closures of our RHCS, a move which is devastating for many, by these people and their pawns, only solidifies the fact that they do not advocate for all.

2.  They are not interested in any information that is brought up that indicates extreme mismanagement of our public funds by DSHS. If you look at the Washington State Auditors website and read the reports you will be astounded by the lack of oversight with our public money in the hands of DSHS.

3.  If this mismanagement was even slightly corrected, there would be millions of dollars saved which could then be put towards real care of our citizens.

4. They are advocating for expensive social experiments to be done with the lives of our most vulnerable citizens  – they want to forge ahead with their blinders on regarding true costs – both in dollars and in peoples’ lives.

5.  Assessments and Quality Assurance surveys that have been mandated by law have not been completed or analyzed.  Regardless of this fact, these programs are considered “successful” – by what standards?

6.  One success story that was presented to the public is about an autistic man.  He lived in an RHC for many years and finally was becoming stable.  It was decided to transition this man to a “community” setting – this process took 2 years and many, many hours of intense 1:1 and sometimes 2:1 assistance and behavior support.  He did move to a home and a new job (doing the same sorting type of job but rather than in a sheltered workshop he was now supported in a factory).  Their story ended here -SUCCESS?  – well what they didn’t tell us was that this man only lasted a few months in the job at the factory.  Something happened – we don’t know what but he’s back to square one, more intsensive supports and searching for another job.  I don’t call this success – I call this a social experiment with this man’s life.

He was fine and his behavior was controlled and he had a job – I can’t imagine what this experiment, which DDD, DSHS, The Arc and other agencies call a success cost our citizens.

This is social experimentation done to our most vulnerable citizens?  Did this man have a choice?

They consistently remove posts from public social network sites of any posting that might question their platform.

I have too many of my deleted and censored posts to keep track of them.  I will post links to some of the more recent ones that have been removed.