Tag Archives: developmental disabilities

Entitlement?

We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.

 

Children’s Mental Health and Developmental Disabilties

After watching the House Health and Human Services Appropriations and Oversight Committee Work Session from December 1, 2011, I really saw that the mental health folks are much more aware of the cross systems issues and the problem with “silos” that the DD folks seem to be unaware of.  DDD really needs to look again at the services that their clients receive and share accurate data.  The data they share is so full of inaccuracies that those who use DDD and DSHS data as their facts (The Arc Chapters) are only hurting the very people who they are advocating for.

 

This is clear by the crisis that we have dug ourselves into.  There was NO cost savings from closing Frances Haddon Morgan Center as many were led to believe.  Now instead of using that “savings” for more in the community setting, those who are in the “community” settings are going to lose even more – This treatment is inhumane and is done by the very agency that is set up to protect our most vulnerable.

 

I wish that members of the The Arc chapters would look at some of the data that I have been able to gather and realize that what DDD is giving them is misinformation.  Rather than censoring me or accusing me of abuse because I have questioned the DDD and DSHS reports, it would benefit all of us if someone would actually look at this data and realize that what I have is critical information.

 

The fact that my questions to the authors of some of these reports and the administrators in DSHS and DDD are not answered  should be a big clue that there is information there that they do not want to acknowledge – I would assume because it would show that they are not being truthful in their approaches to policy.  If they were , I believe they would gladly answer my questions or at least tell me that I’m wrong.  I’ve not heard that I’m wrong either.

 

If anyone would like that data, I’m more than willing to share.  The more who are aware of this and who understand it, the better for ALL people, with and without developmental disabilities.

 

I will be posting another letter with some very specific questions that DDD and DSHS need to answer.

Resident hours per day charts

 

Thank you,

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

 

 

DDD Costs of Care and Decisions which cost lives

Some decisions have been made which have cost people their lives – I’m hoping that before anymore lives are lost or hurt, our legislators will be given accurate data upon which to base their decisions.

This has not happened in the past due to ideology gone awry.  The cost reports for the care for our citizens with developmental disabilities has been falsified and reported inaccurately.  As a start to this, I have prepared the attached letter – it has a few charts and examples of where this reporting has really missed capturing the costs of care for some of our citizens with the highest acuities who chose to live in small community homes.  Remember, this is not the choice for everyone.

The RHC is the most COST EFFECTIVE environment of care for our citizens with the highest acuity.  Why, in times of budget crisis would people allow these misleading cost reports to guide them is beyond me – not only are we ending up spending more for less care but fewer and fewer people will be able to receive care too.

Please read the letter -  Comprehensive Cost comparison

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

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.

Jacqueline C. MacRae Therapy Garden

Friends of Fircrest is honoring Jacqueline C. MacRae with a Dedication Ceremony on Thursday, August 25, 2011 at 10AM in the Therapy Garden.

There is a lovely new bench sculpted by Pat McVay in honor of our appreciation for Jackie.

 

 

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

DDD “No-Paid” Caseload, part 2

Many in our community are confused by terms that are used and what they actually mean.  According to DDD Administration, this is what I have learned regarding the DDD “No Paid Caseload.”  We need to keep the reality of what this term means in the forefront when looking at DDD and DSHS budgets and services which we provide to our community members.

To be eligible for DDD, one must meet the eligilitiy under  RCW 71A.10.020  Our state’s DDD agency reports the “Total DDD Caseload” in reference to the number of persons who have a current determination for DDD eligibility.

DDD eligibility does not mean that there are paid services.   DDD paid services are dependent on availibility of funding and/or eligibility for the specific services.  The Medicaid State Plan services and services to people enrolled in a Home and Community Based Waiver are not limited by availibility of funding but must meet the eligibility requirements for those programs for services.  Not all people with DDD eligibility meet those requirements.

For all other services, an individual must meet eligibility requirements as well as the division having funding available for the desired service.  DDD utilizes the CARE Assessment to determine whether the person meets eligibility requirements for a specific service.

Those who are currently receiving a funded service through DDD are referred to as the “Paid Services Caseload.”  Those who do not receive a funded service through our division, either due to lack of funding, not meeting eligibility requirements for a specific service, or not desiring paid services at the present time are referred to as the “No Paid Services Caseload.”  The Paid Services Caseload plus the No Paid Services Caseload comprise the Total DDD Caseload.

Also, the “No Paid Services Caseload” clients means that they are not receiving a paid service through DDD.  Many of the DDD clients do receive services from other programs within DSHS.  DDD does not keep track of nor have awareness of other services within DSHS that the DDD clients may be receiving.

Services Received by DD Clients in FY 2008

programs which DDD clients access