Tag Archives: advocacy

Please Ask DSHS and DDD These Questions!

This letter was sent to all Washington State Legislators and many other advocates.  I do hope that these questions are asked and that answers are received.

 

december 1 letter to legislator and others

 

The Department of Social and Health Services and the Division of Developmental Disabilities NEED to answer these questions and more.  The data that they continually present to our legislators is flawed and incomplete and doesn’t tell the whole story as it needs to be told in order to make policy decisions.

 

This is who we need to ask questions of:

DSHS – Aging and Disability Services Administration Tree

Susan N. Dreyfus, Secretary

Department of Social &  Health Services

Susan.Dreyfus@dshs.wa.gov

 

Don Clintsman

Division of Developmental  Disabilities

Aging & Disability  Services Admin

donald.clintsman@dshs.wa.gov

 

 

Janet Adams

Office of Quality Assurance and Self Directed Services

adamsje@dshs.wa.gov

 

 

Shutter Rainier School?

This proposal is thoroughly lacking in sound judgement.

1.  To close this facility will cost our state millions of dollars – the data that these decisions have been made on have been missing many cost areas and are wholly inaccurate.  Please take a look at the charts here residential Cost Charts for a much more realistic view of the actual costs.   Bear in mind that even these costs do not take into account several critical areas of cost:  Food, Medical and Habilitation.

2.  Aside from the issue of cost – What about the PEOPLE?  Are we not here to help care for others?  Take a look at this essay which illustrates how we recently cared for one of our most vulnerable citizens  Risks outweigh Benefits.  Is this what we want to replicate with moving residents from their safe, stable homes at Rainier?

3.  This IS NOT THE ANSWER – LEAVE OUR STATE OPERATED RESIDENTIAL FACILITIES ALONE – THEY ARE THE BACKBONE AND SAFETY NET OF CARE!

Imprisonment for people, death to some – It’s coming down to that –

Our state is in a crisis – that’s not news to anyone.  Some of the crisis is self-made from some “advocates” who have pushed inaccurate information to our legislators.  The false information and reports based on inaccurate data were utilized in decision making – decisions that are now coming back to bite us.

There are some solutions but people will have to acknowlegde some mistakes that were made.  Here is just one solution – retention of Direct Support Staff -

We need to think of Quality of Life for our citizens with developmental disabilties.  Having staff turnover rates up up to 44% is not only disturbing but dangerous and expensive.  Do you know that if we changed and tweeked the system just a little, we could save over $28,000,000 and improve the quality of life not only for residents but also for caregivers?

Do you know that moving some residents to small community homes will be imprisonment for them?  Without staff to care for them or staff to take them to appointments and community outings, they will be imprisoned in their homes – is this the type of life that you would wish on anyone?

One can clearly see there is a huge problem: Not even taking into account the effect on residents and the loss of knowledge and skills in relating to residents when staff leave, the lack of continuity in care (all which add to stress and increased behavior issues in residents), all the other issues with staff turnover that are seen in the business world are seen here too.

On average it is concluded that it costs about the annual salary of the person to replace that person – so given that, how much money could be saved in retention of staff (increased wages would help and would clearly offset the cost of staff turnover) which would then improve the quality of life.

Group Home Direct Care Staff make roughly $10.00/hour (some more, some less range is $8.55 – 13.62 in 2010) so that calculates out to about $20,000 for each person – so for 2010 in group homes that comes to $2,100,000 dollars on just staff turnover!!!!

Supported Living is $28,900,000

Now those are some ridiculous numbers – One of the keys to this problem is to look at staffing and how to retain the staff – This is what will not only save money but  improve the quality of life for EVERYONE!!!

Now is the time to think about new systems  – think outside the box (sorry for the cliche)

 The data for this chart was obtained from the DDD Residential Programs Staffing Wage & Turnover Study, years 2008, 2009 and 2010

Type of Program 2008 2009 2010
Group Home 48.1 44.3 39.2
Supported Living 44.7 37.8 35.8
SOLA 18.9 14.9 14.4

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

 

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute

DD Advocates need to come clean with accurate information!

It is critical to drop the adherence to the ideology that “community” living is best and less costly than living in an ICF/DD for many of our high needs citizens with developmental disabilities.  This dogmatic approach is hurting everyone of us – disabled or not.  A continuum of care model takes variety into consideration in addition to cost effectiveness, safety and quality.  A continuum of care model is what needs to be looked at – a model which benefits everyone – disabled or not.

Please see this link for information Come Clean.  This roughly outlines some of these issues.  Resources and accurate data taken from DDD and DSHS management sources.

 

Letter to The Arc Chapters in Washington

I wrote this letter and sent to all Executive Directors of all Arc Chapters in Washington State.  I believe it is critical to support a continuum of care and hope that our chapters will be  innovative and come to understand the importance of this model.

We have some real work to do – given that one of the MAJOR concerns regarding safe and quality care is the lack of Direct Support Professionals.  We, as advocates, must push for training, increased wages to promote recruitment and retention of staff and support for staff themselves.  Having adequate staff is one of the cornerstones of safe care for our loved ones.

I attached the following documents to each email in hopes that the Executive Directors will decide to share the information and  join in support of a continuum of care.

Consortium for Citizens with Disabilities Letter

recruit and retain DSPs

Dear Advocates for DD

 

Dear Arc Executive Directors,

I am writing a letter to all of you in the State of Washington in hopes of coming together in support of a continuum of care for our citizens.  I believe that the division that has been created is only hurting those who we all advocate for.  Please join in supporting advocacy for a continuum of care model for our community members. 

A Continuum of Care model is Person Centered, upholds the U.S. Supreme Court Decision Olmstead and the U.S. DD Act.  This model serves to meet the needs of the individual with the needed supports to enable that person to live in the least restrictive environment for that person.  This is an individual decision which can only be made by those who know the person – hence, Person Centered Care. 

Please see the attachments regarding issues pertaining to these areas.  I do hope that our Arc Chapters in Washington may be able to take an innovative lead in the nation and realize supporting a Continuum of Care Model serves our citizens best.

Please feel free to distribute the material to interested parties.  It is critical, particularly in these times of more budget cuts, that our advocacy is united and best serves those we care about.

Thank you,

Cheryl Felak, RN, BSN
Disability Advocate – Parent
Because We Care – Beyond Inclusion
Seattle, WA

Developmental Disabilities Coalition for Washington State

Dear Advocate for our citizens with Developmental Disabilities,

We are gathering people and organizations to become members of our Developmental Disabilities Coalition for Washington State. We realized that the support is very fractured across the state and with this new coalition we will be able to communicate, educate and interact with others who maintain that a continuum of care for our citizens is critical.

DD Advocates support person-centered care which focuses on quality of life issues, health, safety and community for our loved ones.  We uphold the U.S. Supreme Court Decision Olmstead which guarantees choice to the individual.

This letter is going to all groups within our state who advocate for our citizens with developmental disabilities.  Please pass it on to new groups or interested people.  Also, please read the enclosed  Consortium for Citizens with Disabilities Letter regarding their position on H.R. 2032, a bill which does not uphold the U.S. Supreme Court Decision Olmstead.

There is much work to be done particularly with the onset of more budget cuts.  This is not the time to continue a fractured advocacy movement. 

Please commit to the support of a continuum of care model and join our online group at

 dd-coalition@googlegroups.com

 

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