Tag Archives: DDC

“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.

Child Family Survey – letter to DDC

 

 

 

Dear Developmental Disabilities Council,

Thank you for publishing the National Core Indicators Child and Family Survey which included the DDC Review Panel Recommendations. (Chld Family Survey)

I notice that many of the recommendations state information should be shared with other organizations who may find the information useful.  This also includes collaboration with parent support and advocacy groups to ensure families are connected to support in their local communities.

This collaboration is especially important when families are in or close to a crisis.  These supports need to be in place and available when families need them.

The Panel recommends that organizations (DDC, DDD and other advocacy organizations) find avenues to fill gaps for families who are not receiving information regarding services/supports which may be available.  It is also recommended that the Division (DDD) provide more choices in service and support to allow families to make real choices.

In addition to the above recommendations, I find one which reinforces my belief that the DDC should provide families support and strategies on connecting with their community.

Given these highlighted recommendations, I believe that the Developmental Disabilities Council needs to be more cognizant of the advocacy groups in our state and treat each group with equal access to not only receive information but to distribute information.  This is true choice and will enable the families to choose the information which best fits their circumstance.

Without this freedom of choice, families are restricted to information which promotes only one view and does not support a continuum of care and services for our community members.  This view and restriction is discriminatory – not only to our community members with developmental disabilities but also their families and the community at large.

It’s fine to look at models – but we must remember they are only models – they may not be the right fit for everyone.  The Developmental Disabilities Council needs to recognize this and allow not only the most prominent advocacy groups to disseminate information but give equal space to the grassroots organizations – many of which are much more in tune with the reality of life for these families.

These groups have much to offer – it’s time for the DDC to acknowledge their existence, research and recommendations.

Thank you,

Cheryl Felak, RN, BSN

Disability Advocate – Parent

Because We Care – Beyond Inclusion

State Audits Show DSHS lost over 2 million dollars due to mismanagement

The Department of Social and Health Services is so mismanaged that they have lost over 2 million dollars in our public funds in just the past couple of years.

I want to know why the department is not scrutinzed and held accountable for thier lack of ability to manage payroll, contracts, benefit payments etc. yet say they do not have the budget for cost effective, crucial programs and services for our citizens with developmental disabilities.

Why is DSHS allowed to cut programs, why do some prominent agencies which masquarade as disability advocates, some of these even paid with our public funds themselves, advocate for closure of needed and desired programs while at the same time pushing for the undertaking of costly experiments with the lives of our most vulnerable citizens?

I am outraged by not only the lack of accountablity but the lack of integrity in the managment of DSHS and the integrity of some advocates (The Developmental Disabilities Council, The Arc Chapters, just to name two – there are more involved in this scandulous cover-up)

Our legislators and public are not told the truth about the costs nor are they told the truth about what is found in the data of many reports.  Not only is much of the data misrepresented but U.S. Supreme Court Decisions, such as Olmstead, are misrepresented by these agencies.

It is time that we, as grassroots advocates, make these issues known and upfront.  It’s a hard battle to fight but we need to do it for those who cannot do it themselves.

See this document for resources, facts, Washington State Auditor’s reports and other issues.  Many of these issues were defered and will be looked into this year, hopefully.

DSHS Audits and losses

Washington State, DSHS and DDD discriminate against our youth

With the passage of a new law which our Governor, DSHS Secretary and some prominent groups which masquerade as disability advocates celebrate as “historic,” they are certainly correct.  The reason that this law is “historic” is because it discriminates against our most vulnerable citizens and in particular our youth with complex needs. 

 

 I must admit that I am still stunned by the passage of SSB 5459.  The process with which this bill was passed, the rhetoric which was continually pushed and the total dismissal of facts derived from data from the Department of Social and Health Services and The Developmental Disabilities Division’s own reports all pointed to a pre-planned action to dismantle the service system which supports a continuum of care for our citizens with disabilities. 

 

There are so many issues relating to this bill which are questionable from a legal standpoint in addition to total violation of Federal Statutes as determined by The Olmstead Decision.  Yet, for some reason, Governor Gregoire and DSHS Secretary Susan Dreyfus are celebrating what many of us consider one of the darkest days in disability advocacy. 

 

SSB 5459 prohibits admission of children under age 16 to a Residential Habilitation Center (RHC) for people with developmental disabilities and limits RHC admissions of youth, age 16-21, to short-term respite or crisis care.  Both of these two age groups are greatly discriminated against in this bill.  The civil rights of these groups are being singled out and denied.  This is a travesty – not only for these children but for their families and our communities as a whole. 

 

What we need to focus on are the needed supports for our citizens.  Prohibiting one group, based solely on age, even though they may require the needed supports that are provided in the RHC is denying these citizens their legal and civil rights.  DSHS states that the children should be living with their families and in their communities.  Yes, that is ideal but what DSHS and DDD are failing to realize is that there is a continuum of needs and this continuum goes across all age ranges.  For some, living in a community home or family home is not safe due to the limited supports available.

 

Ms. Dreyfus and many others, speak about the residents in the RHCs as if most are elderly, have lived there most of their lives and that the families and guardians are fearful and unaware of the services in the community.  Ms. Dreyfus is very misguided in her understanding of this. 

 

In fact, there are many newer and younger residents who have been admitted to the RHCs in the past years.  These families have chosen the RHC community as the better option for their children mostly because the services and community supports were not adequate or safe for their children.  The RHC has saved the lives of many of these youth and strengthened their families by providing comprehensive, safe and healthy care to their loved ones. 

 

I recently asked Ms. Dreyfus what would happen to these children under 16 who could not be safely cared for in a community residential home or family home.  Her response to me was that the families will always have the choice of an RHC but they will have to go out of state.  I ask, is that really a CHOICE?  From my experience and others, the other choice that DDD would offer is to have the police take our loved one with a developmental disability to jail.  Why are Washington State, DSHS and DDD refusing to allow our eligible youth full access to the needed supports and services which they are legally, by Federal Statutes, entitled to?

 

Our Citizens are worth the fight to maintain civil rights

Let’s uphold the civil rights of all of our citizens, regardless if they are able to stand up for themselves or make their voices heard.

Over and over again, we hear about a fictitious number of DDD clients who do not receive services, we hear about the how keeping our RHCs open takes away services from those who may need services and our most vulnerable citizens with the most complex needs are continually accused of using more than their share of the pot which makes others go without. 

 

This is the “Big Lie” that is told over and over again by agencies which masquerade as Disability Advocates.  They state that it is cheaper to care for these individuals in the community – yes, that’s true if you do not support their assessed needs.  That’s this issue – these individuals have needs that have been assessed and they are in the environment which best supports their needs in order for them to be as active and successful in their life and community as they can be. 

 

Yes, there are individuals with just as complex needs living in the community – no one is denying that fact.  Also, no one is telling those individuals or their families that their care is too costly so they will be evicted.  These individuals are celebrated for the fact that they live in the community  – no matter what the cost.  But I ask, are they really “in the community?”

 

I’ll tell a story of a man that has recently moved out of Frances Haddon Morgan Center.  This man has been celebrated as a success for the Roads to Community Living Grant.  I attended a parent gathering this past spring which was geared at informing parents/guardians of the benefits of moving their loved ones out of an institution.  Brock was the example they highlighted in showing how great this program could be.  There is a video on Youtube entitled “Brock 8” which refers to this gentleman.

 

At this gathering, we were told that the transition for Brock was very intense involving many specialists and took about 2 years.   In those two years, there was much property destruction that needed to be fixed due to Brock’s behavior.  Brock and anyone who would be working with him needed to be trained in the Picture Exchange Communication System (PECS) which Brock would be using in his new job situation.  Everyone from the Residential agency, DDD and other programs which were involved with Brock’s transition spoke to the difficulties but that over time (2 years) Brock was able to live in a community home and have a job. 

 

What was very interesting to me was that they then said, “He had that job for about 2 months but isn’t working now but we won’t go into that.”  I took that to mean that this expensive experiment wasn’t as successful as they wanted to picture it so they were going to end the success story at this point.   I later asked about this but due to HIPPA, I am not privy to the information but was told that yes, Brock was not working but was “volunteering.”  There had been a change in vendors and since it had taken several months to train the previous vendor, it would be anticipated that there would again need to be months of training for a new vendor. 

 

 

I do know that there are two young men who have moved out of an institution into a community home.  For these two men, who cannot have others living with them due to safety issues, the staff and housing for each of these men is at least $500,000 a year.  (DSHS)

 

I was provided with the list of the 30 most expensive clients for community residential clients by DDD.  The average annual rate for this group is $218.000 per year (range = $181,603- $353,973) – that is only the portion of care that DDD expends.  This does not include other services in the DSHS package such as medical, economic aid, transportation or food stamps.   There are other clients who receive 16 hours private duty nursing care in addition to other services to enable them to live in a community home.

{For reference, the average annual comprehensive cost for an RHC resident is $186,000 (DSHS)}

 

These are the complex care clients who live in the community and these clients are expensive no matter where they live.  Moving more complex clients out into community homes against their wishes only for the sake of ideology of the masquerading advocates is a nightmare.  There is so much wrong with this scenario yet because of the untruths and rhetoric that are continually published without question, people believe what they are told. 

 

Our citizens deserve better. 

 When a person chooses the environment which works for them as guaranteed under Federal Decisions, no one should be able to evict them from their homes.  On top of this, the reasons given are under false pretenses:  less expensive, more involved in community, better care – none of these reasons can stand up when the facts are presented.  The problem is that the facts are not presented or presented but tossed aside because they do not support this ideology gone awry. 

 

One huge part of this problem is due to the silo effect as explained in my previous post.  Sure, maybe moving a client out of the institution would make the DDD budget less but those costs are still there under another program within DSHS or put upon the community (as in increased emergency calls to the Fire and Police Departments.)  It’s time that our government, legislators, advocacy agencies and citizens were responsible and looked at the whole picture of care – not just the peephole that suits their cause. 

 

 

It is clear from actually looking at the figures that in reality, the comprehensive care in the RHC is much more cost effective than care for an individual who chooses to live in the community.   I don’t understand why the residents who choose to live in the RHC, which is clearly a cost effective care center which supports their assessed needs, are harassed and threatened with eviction, due to their care being expensive when in reality, their care is less expensive than if they chose a community setting. 

 

Yet, if they chose a community setting, the cost of their care would greatly increase, yet these same advocacy groups who complain about their current care being too expensive, would then celebrate in the fact that their care is now community based, yet much more expensive.   

THIS JUST DOES NOT MAKE SENSE if one really cared about the person.  So, obviously, this issue is not about the care of the person but about something else.  Who are these advocacy groups really advocating for? 

 

 

Works Cited

DSHS. “DSHS Client Services FY 2007-2008.” n.d. http://clientdata.rda.dshs.wa.gov/ReportServer/Pages/ReportViewer.aspx?/CSDBAnyYear/Landscape_StateClientSvcsByAge.


Washington State Senators who voted “Yes” on SSB 5459 are tagged in this message.  I don’t believe that these Senators were exposed to the real issues or that the facts were presented to them.  I believe that their decisions on this case may have been based on rhetoric and false assumptions that prevailed in the legislative session.  I would love to talk to any of them and try to educate them on the real issues with real people and real cases involved.

Letter to the Editor in The Seattle Times

 

 

Link to letter to the Editor regarding Governor Gregoire signing Substitute Senate Bill 5459 into law.  This is a sad commentary on the priorities of our state with regards to the care of our most vulnerable citizens and their quality of life, health and safety.

 

http://seattletimes.nwsource.com/html/northwestvoices/2015341101_govgregoirevetoespartsofmarijuanabill.html