Why the confusion, King 5?

We often hear varying opinions about what the cost of care for people with intellectual disabilities really is.  This  should not be so difficult to figure out given that there are resources upon resources to use.  For some reason though, several of the resources which could give us the best information are not used.  This makes no sense to me unless the goal is to keep the public and legislators confused and to keep pretending that there is no real way to make a comparison of cost for community and institutional care.

In the most recent airing of “Last of the Institutions” by investigative reporter Susannah Frame of King 5 News, she did refer to the cost of care for one young man with high support needs.  He lives in a home supported by Alpha Supported Living.  Ms. Frame also interviewed Scott Livengood, CEO of Alpha Supported Living and referenced the “average” cost of care for those in dispersed community housing.  This young man’s daily care cost is $370.00 – far higher than the “average” cost reported to legislators and the public.

Using this “average” cost is a tactic that is used to hide the truth of the issue.  Those in DDA and the agencies know full well what the cost of care of each individual in a community setting is.  Each agency has negotiated with DDA the exact number of hours and supports that each of their clients will need.  It is no mystery.  Pretending that those with high support needs can be cared for at the “average” cost is nothing but a lie.

For instance, a couple of years ago I was given the daily rates for the cost of care of the 30 residents with the highest support needs and cost.  The daily range was $497 to $969 with an average direct care cost of $598.  If there was an “average” to use for the cost of care for residents in the shared community if they were to move to dispersed housing, this would be the average to use.  See this link for the chart with the costs and the support needs assessments of these clients. Highest 30 Residential Clients by Cost and acuity

I spoke with Russ Walker, Executive Producer for King 5 Investigators.  I brought up the issue of the dispersed community costs not including medical, dental, nursing care, prescription medications, and food – just to highlight a few cost centers.  Mr. Walker assured me that the costs did include these and they knew since Mr. Livengood had showed them the accounting for Alpha Supported Living. It’s interesting to note that the Certified Cost Report for Alpha Supported Living does not include these costs.  Certified Cost Report for Alpha Supported Living 2014

When looking at the actual data,  the calculations and cost accounts are very different than what is provided to our legislators and public.  When I have presented these differences to some legislators, Disability Rights Washington, the Developmental Disabilities Council and The Arc Chapters – the common response is refusal to communicate.    They have not been able to prove me wrong even when given the opportunity to do so.  I believe this means they are not able to prove me wrong.

Take a look for yourself and decide – what costs are missing from the community support side of the equation?  Do the costs add up as equal in your judgement and calculations?   Click the link for a table of the daily cost per resident.

Shared Community RHC and Alpha Supported Living Cost Comparison

I am using Alpha Supported Living as the example since this is the agency that Susannah Frame used in her investigation.  Alpha Supported Living is one of the better agencies yet the reimbursement from the state barely covers the cost.  Alpha has major fundraising campaigns to raise money to provide quality services to their residents.

Alpha Supported Living 990 2014

DDA Account Descriptions

Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –

“Throwaway People”

What happened to The Arc?

Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council (DDC) wrote about the issues very well in the years 1999, 2002 and 2005.  Please read about the advocacy for our “most vulnerable and politically powerless” and voiceless members of our communities. (Ed Holen and Sue Elliott Articles to Seattle Times)  The “Special to The Times” of 1999 highlights issues that have not changed in the 13 years since it was written.

The Arc used to advocate for people with developmental disabilities to have the same basic rights as everyone else – “the right to feel safe in our own home, the right to regular meals, the right to feel like a contributing member of society.”

When did this advocacy change to removing people from their safe homes in supported communities to become isolated?  When did it change to increasing the incidence of crisis oriented care by closing supportive community homes?  When did it change to not listening to the families and guardians of those who cannot speak?  When did it change to discriminate against our most vulnerable – the “Throwaway People?”

I want to know when the identified problems of ” inadequate staff training and compensation, no means of gauging the appropriateness of care, little oversight of such facilities, and no way to bar or punish those who abuse or take advantage of people with developmental disabilities” were corrected.

When were the suggested changes which The Arc and DDC sent to the Governor, the legislature and the Attorney General in 1999 implemented?

  • Allow family or relatives of individuals with developmental disabilities to take civil action in cases of wrongful death
  • Make hearsay evidence admissible involving cases of abuse and neglect of people with developmental disabilities
  • improve client to case-manager ratios (200 clients to one case-manager in 1999 – “the worst in the entire country”)
  • Require annual certification of all providers who receive contracts from DDD and DSHS
  • establish ongoing education requirements for direct-care providers
  • increase provider wages to reduce rampant and constant turnover

“The only way to ensure the basic right is to provide caregivers training and adequate compensation;  state regulators the authority to ensure quality supports and services;  and to call to account people who abuse the system and people within it.”

If you read the advocacy material printed and distributed from The Arc today what you will see at the top of almost any list is to close the supportive communities (Residential Habilitation Centers – RHCs).  This is in total contradiction of what they have written.  This means advocating to move people OUT of their safe homes and communities into isolated homes with little or no oversight, rapid turnover of poorly trained or inexperienced caregivers and adding to the crisis load of our community.

How did this happen?

Autistic Man walks away from drunk caretaker

This story exemplifies some of my worst fears.

Answers sought after autistic man walks away from drunk caretaker.

I hate to take advantage of situations which have caused harm to others but in this case, I must point out that this is the very issue which I am trying to advocate against.  I have been trying to have the so-called DD Advocates (The Arc, Disability Rights Washington, the Washington State Developmental Disabilities Council, the Community Residential Service Associates and others) look at the facts more accurately.  They refuse.  Maybe more stories such as this will help open their eyes to what they are really advocating for with regards to our most vulnerable citizens with the highest support needs.  They are not advocating for safe, quality, cost effective care but for substandard and negligent care.  Rather than advocating for the vendors, it is time they really advocated for our citizens in need.

Here is my post to the KOMO News story:

As a healthcare provider, parent of a child with intense support needs and advocate for our most vulnerable citizens, this story more than sickens me. I am appalled at the care, lack of oversight and more that is reported in this story and am so thankful that this man was found and will hopefully now be cared for in a caring, safe, healthy and humane environment for him.

I’m so afraid that we will hear more and more about abuses such as this one. The Arc, Disability Rights Washington and even the Washington State Developmental Disabilities Council all oppose any type of congregate care for our most vulnerable citizens – stating that all citizens can be safely cared for in community settings for less cost. The only way to have it cost less than a congregate care community is to endorse negligent care such as this type of care.

With staffing turnover rates of up to 45% in these community settings, there is no stability or sustainability and I wonder about the level of training and lack of back up support for the staff and residents. To me, this situation is a time bomb ready to go off at any moment.

This is so unfortunate since the so-called DD advocates will not address the facts about support care levels and safe care. They support the vendors, such as Service Alternatives rather than our loved ones.

I support a continuum of care model – a model which is based on the assessed needs and choices of the person and their family/guardian. This model includes the Residential Habilitation Center (Fircrest, Yakima Valley School, Rainier School and Lakeland Village) through independent homes. It is the safest and most cost effective model to best serve ALL our citizens with intellectual disabilities.

Much of the factual information has been shared with these so-called DD advocates and legislators – but they do not want to address the facts. I do hope that publicizing these tragedies will serve some good in knocking some sense into those who make the policies. Much of the research regarding the facts of the issues can be found at www.becausewecare1.com.

It is our duty as a society to safely care for our most vulnerable. Yes, this is a hard job, I know, I’ve been there and I am SO thankful for the care that our son is finally able to have at Fircrest. He loves his home there, he loves his school (Shorecrest) and he is active in his community. Yes, it’s not perfect but it’s the best we can do and it is the safest and least restrictive environment for him and many others.

I do know there are some excellent community homes with excellent caregivers.  We need to support our caregivers – they are the backbone which provide stability and sustainability.

Washington State Developmental Disabilties Council

I am dismayed by the lack of unity and foresight that our state’s Developmental Disabilities Council is exhibiting.  I had thought that as a Federal-State Agency, they would be a the forefront of being an advocate for our citizens with developmental disabilities – in fact, it’s quit the opposite.

I had been warned by many of the council’s prejudice against anyone who advocated for a continuum of care.  Being optimistic, though, I thought that I would be able to talk to people and get them to see the truth of what was really happening.  I’m still optimistic but I have had a dose of their reality – meaning that the group is close minded and outright discriminates against our most vulnerable citizens who cannot speak for themselves.

I find this deplorable and irresponsible and I would urge this group to have a huge house-cleaning so that some new blood can help bring quality care and accessible, sustainable care to our citizens.  This group will not be able to reach that goal if they do not change their way of thinking.

They state that they have been recruiting new members – maybe they recruit but they do not ask people to join  – particularly people who may think differently.  I have applied, was not interviewed but did receive a letter from Governor Gregoire thanking me for my application but I was not selected.  My application must have been reviewed by the council though because this year, the vice chair (who I have never met or spoken with) wrote to me “Thank God you were not chosen to be on the council” along with some other choice comments and derogatory remarks.  Remarks that I also find irresponsible of the vice-chair of the state council.

While in a DDC meeting, there was an announcement that Frances Haddon Morgan Center would be closed by the end of the year.  One woman council member raised her arms and cheered – cheered at the demise of our loved ones – what type of advocacy is that?

Please, if you believe in advocacy which supports our citizens and looks to quality, sustainable and accessible care, consider writing to Ed Holen, Executive Director  or other staff members of the Developmental Disabilities Council with your concerns.  They need a dose of reality.

DDC Letter November 18

Thank you,

Cheryl

Please write to:

Developmental Disabilities Council

PO Box 48314
Olympia, WA 98504-8314

Ed Holen, Executive Director Ed.Holen@ddc.wa.gov

Jennifer Blazian, Contracts Manager Jennifer.Blazian@ddc.wa.gov

Sieng Bonham, Budget & Fiscal Director : Sieng.Bonham@ddc.wa.gov

Brian Dahl, Support Coordinator : Brian.Dahl@ddc.wa.gov

David Maltman, Policy and Community Partnerships Manager David.Maltman@ddc.wa.gov

Donna Patrick, Public Policy DirectorDonna.Patrick@ddc.wa.gov

Phillip Rasmussen, Receptionist Phillip.Rasmussen@ddc.wa.gov
Eva Rooks, Planning and Communications Manager Eva.Rooks@ddc.wa.gov

Linda West, Membership Services Coordinator  : Linda.West@ddc.wa.gov

Hidden Costs, Access to Health Care, What are we to do?

I have attached two essays which help explain part of the problem of access to healthcare and hidden costs when people and agencies which masquerade as Disability Advocates push for the closure of the Intermediate Care Facility for People with Developmental Disabilities (ICF/DD).  These so-called advocates’ agenda is based on old school ideas and false information for today’s population.  The proposals they have will end up costing more, reducing services all around and hurting everyone.

 

Now is the time for some new thoughts and actions – please read the attached and post comments.

 

Thank you – Cheryl

Medical Home Essay

Hidden Costs of care

 

DDC and DDD sending survey regarding “No Paid Service”

 

In early September the Informing Families Building Trust project will send a letter to individuals with developmental disabilities and their families who are on the No Paid Services caseload.  This letter will invite them to participated in a short online survey.  The survey, which is a collaborative effort of DDD and the Washington State Developmental Disabilities Council (DDC), is being conducted to understand what individuals not receiving services and their families need and to better inform advocacy for appropriated funding of services.

Please encourage families who receive the letter to complete the survey.  Survey responses are confidential but are extremely valuable in helping us better understand people’s unmet needs.  The survey will be open from September 7 to September 30, 2011.

If you have questions about the survey, contact Eva Rooks at the DDC by phone at 8—634-4473 or by email to eva.rooks@ddc.wa.gov.

Thank you.