Tag Archives: The Arc

Is The Arc crossing the line? Where does the Antitrust law come into play?

The time has come for people to be aware of the monopolistic power which The Arc organization wields regarding control over information dissemination, public policy, social media and advocacy with regards to issues concerning our citizens with intellectual disabilities.

1.  The Arc frequently misinterprets the U.S. Supreme Court Decision Olmstead:   (From Legal Information Institute – Cornell University Law School )

”  This case concerns the proper construction of the anti-discrimination provision contained in the public services portion (Title II) of the Americans with Disabilities Act of 1990, 104 Stat. 337, 42 U.S.C. § 12132. Specifically, we confront the question whether the proscription of discrimination may require placement of persons with mental disabilities in community settings rather than in institutions. The answer, we hold, is a qualified yes. Such action is in order when the State’s treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the affected individual, and the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. In so ruling, we affirm the decision of the Eleventh Circuit in substantial part. We remand the case, however, for further consideration of the appropriate relief, given the range of facilities the State maintains for the care and treatment of persons with diverse mental disabilities, and its obligation to administer services with an even hand.”

And more:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings”.

” Consistent with these provisions, the State generally may rely on the reasonable assessments of its own professionals in determining whether an individual “meets the essential eligibility requirements” for habilitation in a community-based program. Absent such qualification, it would be inappropriate to remove a patient from the more restrictive setting.”

“Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.”

“There may be times [when] a patient can be treated in the community, and others whe[n] an institutional placement is necessary For other individuals, no placement outside the institution may ever be appropriate. See Brief for American Psychiatric Association et al. as Amici Curiae 22—23 (“Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times–perhaps in the short run, perhaps in the long run–for the risks and exposure of the less protective environment of community settings”; for these persons, “institutional settings are needed and must remain available.”); Brief for Voice of the Retarded et al. as Amici Curiae 11 (“Each disabled person is entitled to treatment in the most integrated setting possible for that person–recognizing that, on a case-by-case basis, that setting may be in an institution.”); Youngberg v. Romeo, 457 U.S. 307, 327 (1982) (Blackmun, J., concurring) (“For many mentally retarded people, the difference between the capacity to do things for themselves within an institution and total dependence on the institution for all of their needs is as much liberty as they ever will know.”

2.  By misinterpreting “Olmstead“ The Arc incorrectly informs the public that “Olmstead” does not support Intermediate Care Facilities for People with Intellectual Disabilities (ICF/ID) or congregate care.

3.  Many chapters of The Arc censor and block postings which point out the inaccuracies of this misinterpretation.

These behaviors from The Arc Chapters are bordering on violating the U.S. Antitrust Laws by possessing a monopoly of power in a relevant arena and willfully acquiring and maintaining that power by censorship of information to the very population they state they are advocating for.  If The Arc did not run a monopoly I believe they would welcome the sharing of information to better inform people of their choices with regards to person centered planning.

The Arc does not support a continuum of care system and by this decision is practicing discrimination against some of the very people they state they advocate for.  How can this be?

The Community Advocacy Coalition requires members to sign a contract which states they oppose congregate care.  How many of these organizations understand by signing this contract they are violating the rights of many who they say they advocate for?  By requiring members to sign this contract, The Arc of Washington State is denying membership to many who advocate for a continuum of care, a system which upholds the Olmstead Decision and person centered care based on the individual’s support and care needs.

This decision of The Arc to perpetuate misinformation and block others from discussions is unfortunate.  There is much good that The Arc has to share but by this practice of censorship they are doing a great disservice to our communities.  I urge The Arc chapters to take a look at their policies regarding this information.

One may wonder why there is not alot of information regarding this topic on other sites.  The reason is that if one attempts to post something that does not align with what The Arc states, the post will most likely be removed and the author will be blocked.

Here is one letter that I received from the policy director of The Arc of Washington after several requests of mine to be unblocked:

 

Cheryl – Sue Elliott and I discussed allowing you to post on The Arc’s social media sites again with the understanding you will abide by the rules of not posting derogatory comments about The Arc and other community advocacy organizations. In order for this to happen, I need you to unblock me from seeing your Facebook posts. Please notify me when you have done so. Thank you  (Written November 3, 2011)

1.  I have never blocked any of the members of The Arc

2.  The term “derogatory” means “not in agreement with” to them

3.  I am still blocked from their sites even though I responded to the above note.

 

Support HB 2150

Please support HB 2150

This bill is geared at raising revenue which will be put into a fund to provide for  vendor rates and oversight of community residential service businesses.

Our community residential services for people with an intellectual disability are crumbling.  The devastating cuts have already reduced the low wages of the direct support professionals  (DSP)who provide the daily care to some of our most vulnerable citizens.  We rely on these DSPs to safely care for our loved ones and we need to support them in their jobs.

There is currently at least a 40% turnover rate among DSP – most likely due to the low wages and incredibly challenging work. About one third of these employees work a second job (as reported on TVW January 11, 2012 Public Hearing at House Ways and Means Committee) or work overtime due to staffing needs.   This staffing turnover leads to greater instability in the workforce.  Without a properly trained and rested staff, our family members suffer.  This then leads to injuries – both to staff and residents.

King County DSPs make about 61 cents more an hour than DSPs in neighboring counties.  This disparity causes a problem in the neighboring counties since staff will travel to King County to work and if needed to work overtime will generally opt to take the overtime in King County and call in “sick” to work in neighboring counties.  This causes undue stress to residents and also a higher turnover rate in counties which neighbor King County.

Cost of care as reported by each agency and DSHS payments to each agency based upon support needs of residents

Please encourage your legislators to vote for HB2150 – this will help our state in living up to our Washington State Constitution – Article 13 as shown below.

Washington State Constitution

Article 13

 

 

ARTICLE XIII
STATE INSTITUTIONS

SECTION 1 EDUCATIONAL, REFORMATORY, AND PENAL INSTITUTIONS. Educational, reformatory, and penal institutions; those for the benefit of youth who are blind or deaf or otherwise disabled; for persons who are mentally ill or developmentally disabled; and such other institutions as the public good may require, shall be fostered and supported by the state, subject to such regulations as may be provided by law. The regents, trustees, or commissioners of all such institutions existing at the time of the adoption of this Constitution, and of such as shall thereafter be established by law, shall be appointed by the governor, by and with the advice and consent of the senate; and upon all nominations made by the governor, the question shall be taken by ayes and noes, and entered upon the journal. [AMENDMENT 83, 1988 House Joint Resolution No. 4231, p 1553. Approved November 8, 1988.]

Original text — Art. 13 Section 1 EDUCATIONAL, REFORMATORY AND PENAL INSTITUTIONS — Educational, reformatory and penal institutions; those for the benefit of blind, deaf, dumb, or otherwise defective youth; for the insane or idiotic; and such other institutions as the public good may require, shall be fostered and supported by the state, subject to such regulations as may be provided by law. The regents, trustees, or commissioners of all such institutions existing at the time of the adoption of this Constitution, and of such as shall thereafter be established by law, shall be appointed by the governor, by and with the advice and consent of the senate; and upon all nominations made by the governor, the question shall be taken by ayes and noes, and entered upon the journal. (Washington State Constitution)

http://www.leg.wa.gov/LAWSANDAGENCYRULES/Pages/constitution.aspx

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,

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

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!

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

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