Arc of Washington State – Question their data and resources

The Arc Washington State recently sent out an alert “Crisis Stabilization Needed in Local Communities.”  While this is indeed needed, the information provided by The Arc Washington is not only incorrect with facts but much is actually fiction.

As a respected advocacy agency which many legislators and community members look to for guidance publishing alerts such as this actually hurt the people The Arc is supposed to be supporting.  Where is the integrity and transparency in their reports?

The Arc states that “On average, only 1-3 beds a month are currently used for any respite.”  The Data obtained from the Department of Social and Health Services Executive Management Information System (EMIS)  dates June 2010 through June 2014 clearly show that the Arc is very incorrect.  Below is a graph of the data obtained from the EMIS.  The average has actually been 32 respite clients per month at Yakima Valley School.

Community Respite in RHCs

The Arc states “The cost for placement in Yakima Valley Nursing Facility is $587 A DAY, much more than a community setting.”  Again, data obtained from the EMIS and from the Office of Chief of Policy and Programs, DSHS Quality Programs and Stakeholders Office Chief, and the Crisis Services Program Manager,   the cost of community crisis respite is $1,166 dollars A DAY as opposed to the average $441 at Yakima Valley School of which only $216.00 is the cost to our state when the Federal Medical Assistance Program (FMAP) is taken into account. (EMIS 2012-2014)

Respite at YVSWhen provided with the actual data, one can see that we need to pass E2SSB 5243 rather than reject it.

This bill does not address anything having to do with respite that people receive in their homes and communities and will not take anything away from them.  It will only provide much needed services and help prevent crisis and family breakdown.

Yes, we all want respite in our communities but it is not happening for various reasons.  Respite can be used for a variety of community outings and opportunities but out-of-home respite is also needed.  I can tell you that if my son had been allowed to have any out-of-home respite at all while living at home on a waiver, it may have saved our family and may have prevented him from being moved into the RHC.  I believe that out-of-home respite is an essential component of the whole respite program and will add to the sustainability of community programs.

Resources:

Data received from the Department of Social and Health Services, Executive Management Information System  June 2010 – June 2014, with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions –http://www.dshs.wa.gov/pdf/adsa/ddd/policies/policy3.04.pdf

Report to the Legislature – December 5, 2011  http://www.dshs.wa.gov/pdf/adsa/ddd/Fiscal%20Status%20Report%20Consolidation%20of%20RHCs.pdf

King County DD Wrap up for The Arc of King County Legislative Forum 2014

Letter to King County Legislators – December, 2014  (letter sent as a wrap up after watching the forum on TVW)

Thank you very much for attending the King County Legislative Forum on November 24, 2014. I was unable to attend and present some information regarding critical needs and access to services for many in our communities but do appreciate the opportunity to share the information with you at this time.

With Governor Inslee’s budget proposal it is clear that we will again be looking at more cuts to services for people with Intellectual/developmental disabilities. It is critical to have accurate information regarding community care, respite, crisis care and cost of care in order to make informed decisions.

What is most concerning to me is that facts are not being shared regarding access to and cost of care – particularly for the much needed respite and crisis care. I have gathered the information below in hopes of sharing some solutions to the problem. You heard some heart wrenching stories, particularly from Janice Lawrence and Laura Jorgenson regarding lack of respite and crisis care. My family, too, has experienced these issues – my son faced jail as the only option left for “care” as a 14 year old with profound intellectual and developmental disabilities. Multiple and prolonged hospitalizations were our crisis care until the denial of services was able to be appealed and he was admitted and stabilized at a Residential Habilitation Center (RHC). I understand the agony of these families in trying to secure appropriate care for their children and I work hard to advocate for this care.

You may recall in 2011 our state passed 2SSB 5459. There was quite a bit of controversy regarding this bill for several reasons – mainly closing of the Frances Haddon Morgan Center (FHMC) based on “cost savings” which never materialized and a state law which goes directly against Centers for Medicaid and Medicare Services admission of eligible clients into the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) or the Residential Habilitation Centers (RHCs). Washington State passed a law prohibiting those under 21 from admission to the RHC, regardless of choice and eligibility requirements being met.

The plan was to open up several crisis care centers for youth throughout the state. This plan was not fulfilled – again for several reasons but mainly because there was NO cost savings in closing FHMC from which these crisis care centers were to be funded.

Developmental Disabilities Administration was able to secure one home in Lakewood which can care for only 3 youth at a time. Since opening this Crisis Care Center (you heard one mother, Janice Laurence, talk about her son’s utilization of this center) in December 2012, 12 youth have been able to access these services. Of those 12, only one was able to return to the family home – all others either went to an RHC or a licensed residential home for youth. The daily cost of care in the Lakewood Crisis Stabilization is $1,165.

Frances Haddon Morgan Center (which today sits empty and unused) was able to care for about 22 respite clients per month for a cost of at a daily rate of $541 (federal and state costs combined) – clearly, utilizing the RHC for much needed respite was not only more cost-effective but much more accessible to our communities in need.

Data taken from the Executive Management Information System also clearly indicates how our RHCs serve those in our communities throughout our state. We often hear about the number of “permanent” residents in the RHCs but rarely hear about the much larger numbers of community residents who receive much needed crisis care and respite care. The community members served in our RHCs are more numerous than the numbers of permanent residents served in the RHCs. Also, the RHCs can provide this expert and comprehensive care at 46% of the cost for similar care at the Crisis Stabilization Center in Lakewood.

It only makes sense to continue to utilize the facilities we have and use them to capacity to best serve our communities in need. Closing or consolidating our RHCs is not the answer as evidenced by the wasteful “experiment” we have experienced due to passage of 2SSB 5456.

number of community members who access respite services

Average Daily Cost of Care for Respite

References:

Data received from the Department of Social and Health Services, Executive Management Information System with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions

Report to the Legislature – December 5, 2011

TVW.org 25th Annual King County Legislative Forum sponsored by King County DD and The Arc of King County

http://54.185.64.84/index.php?option=com_tvwplayer&eventID=2014110041

Where’s the Respite Care?

We hear that many people are in need of respite care and I’m sure this is true.  I know that when my son was at home the thought of having respite care provided was just a dream.  Even though he was on a Home and Community Based Waiver which included respite, he was never approved to have respite.

With respite “beds” in such dire need, it is mind-boggling to me that those who need respite and some major advocacy groups still desire to close the Residential Habilitation Centers (RHCs) in our state. They are oblivious to the facts that the RHCs are part of the continuum of care, providing care for many from various community settings.  If they are aware of the facts and they advocate for closure or consolidation, they are really advocating against safe and appropriate care for those who need respite.

For the time period from July 2012 through August 2014, there has been a steady rise in the respite care at our four remaining RHCs.  Yakima Valley School, the RHC which has most recently been “studied” for closure, serves an average of 34 community respite clients per month.

When talking about the RHCs these so-called advocates talk only about the permanent residents of the RHCs.  We hear that there are only 70 people at Yakima Valley School – forgetting that over the past 2 years there have actually been 920 people served there.  Many more people from the community are served at Yakima Valley School than permanent residents.

This is a part of the discussion that needs to be heard.  The RHCs are part of the continuum of care and serve many people who reside in the larger community.  Without the RHCs, where would these people receive the much needed respite?

Cleints served at Residential Habilitation Center

 

The cost of care in the Residential Habilitation Centers is mostly for community care – the permanent residents are less than 50% of the number of clients served.

If The Arc chapters and the Developmental Disabilities Council continue to advocate for consolidation and closure of the RHCs, they are only advocating for fewer and fewer services, both for those in the community and those who are the permanent residents of the RHCs.  Where would all the people go and receive care?

Data from Executive Management Information System – Department of Social and Health Services

Washington State

July 2012 through August 2014

Cost and Community – Part 1

I have not been involved in politics for very long and it has been a steep learning curve for me.  Prior to my son diving into prolonged crisis I had contacted The Arc of King County for Parent to Parent and other ideas.  There was never a parent to parent “match” for me and the message I got from members of The Arc of King County was for me to go talk to my legislators.  I felt alienated by the very group which was supposedly my advocate.

After several years of crisis after crisis, family destruction, loss of jobs and income, and near loss of life, my son was able to be stabilized in the Residential Habilitation Center (RHC) or Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID).  It was after this that I became to understand the importance of advocacy for our loved ones and I also had time to learn and research on the issue.

I also realized then that The Arc was not an advocate for those with high support needs and this is confirmed over and over again from families.  Most recently a family in crisis in need of a supported living arrangement called The Arc of King County and was told “we only serve higher functioning individuals” and had a “I don’t care attitude” and was very “rude.”

This is not meant to be an attack on The Arc – they have done great work for many but it also needs is noted that they do not speak for the whole community of people with intellectual disabilities and do not support the wide continuum of care which includes intensive support needs of those for whom campus type communities best serve.  I would really like to see this issue addressed seriously rather than being dismissed and disrespected without even listening to the real issues.

I scoured original resources, requested data from state agencies through public record requests, studied many reports and research projects and gathered some great information which could really benefit many.  The problem is that this information has not been shared through the “politically correct” channels and is negated, tossed aside and discounted.  It’s a shame because if people just took the time to look at it and ask questions, they would  learn something new and put information to good use.  This knowledge could help alleviate more crisis.

Reading research articles by reputable authors and published in major journals, I have also seen that research does not address the issues of those with the highest support needs.  The research focuses on those who are higher functioning and what happens is this information is then generalized to the population as a whole.  This is a very dangerous generalization which will backfire.

The two major issues are cost and community and I think that almost all people involved agree that these are critical issues. There are major flaws in how these issues are reported and discussed and this is where there is a great divide.

In upcoming posts I will address the issues of “cost” and “community” and give references to data and research.  My hope is that the logic will come through and people will begin to question the rhetoric that just does not add up and make sense.

 

 

Groupthink and The Seattle Times

Once again, The Seattle Times has disappointed advocates for those with intellectual and developmental disabilities.  Is Groupthink so powerful that people totally lose their sense of justice?  Does it prevent people from asking critical questions?

Groupthink results in defective decision making and large amounts of waste in human and material resources.  This is clearly evident in the past couple of decades with over 38 “work groups” that have been formed in our state to tackle the issues of supports for those with developmental disabilities – 38+ reports which have amounted to no decisions or progress.  WASTE of time, money and talents – is this due to groupthink?

Knowledge is power and we are becoming less powerful because knowledge is being kept from us.  Our media has let us down and The Seattle Times no exception.  Many people have written to the editors to try to educate them on the issue but since the knowledge does not agree with the groupthink.  We need to have a devil’s advocate to challenge and alleviate the ongoing groupthink but will this ever be allowed?

Not at the rate we are going!

The politically incorrect idea of bringing congregate and community care together

Hopeful Opportunities are springing up – let’s support these efforts!

COFAR blog

Two initiatives in two separate states call for something that would seem to make perfect sense — expand the missions of congregate care facilities for the developmentally disabled, and merge them with their surrounding communities.

In one case, the State of Delaware is proposing to expand services available at the Stockley Developmental Center by offering medical and dental care now available there to developmentally disabled and under-served persons living in the community.  A Delaware state task force has also called for considering an indoor community sports center or outdoor playing fields at the Stockley facility; and opening up a therapeutic horseback riding program and a therapeutic pool at Stockley to the surrounding community as well.

Like most of the developmental centers in Massachusetts, the Stockley Center sits on hundreds of acres of largely unused land, and currently serves only a small fraction of the hundreds of people who lived there four decades…

View original post 1,026 more words

It’s a Wonderful Lie

WA Action Alert

 

Once again, The ARC – Washington State has issued an Action Alert to advocates with inaccurate and unfounded information.  Is this another attempt to rile up advocates for those who have intellectual or developmental disabilities to go against one another rather than working together for the good of the whole? It is a wonderful lie, but it’s a lie.  That is not wonderful – it’s deceptive and harmful.

Please see this link for accurate information from both the Office of Financial Management and Memo from DDA Asst Secretary Perez re 2014 Proposed Supp Budget.  It is clear from both these documents that The ARC-Washington State is misleading our citizens.  I have written to both Sue Elliott, Executive Director and Diana Stadden, Policy and Advocacy Coordinator to indicate the source of their information for the extremely misleading Action Alert.  They have not been able to produce any evidence to support their claim.

 

Alert

Below is the text of The ARC – Washington State Action Alert

Arc action Alert for posting

Comparing the misleading information above which was sent out in a media blitz on December 19, 2013, the real information is below:

In light of these facts, Governor Inslee is proposing modest adjustments to the 2013 Supplemental Budget.  There is a very slight .7% overall increase in the DDA budget to meet these changes, which include:

  • An expansion of eligibility to Medicaid to individuals between the ages of 19 and 64, with income below 138% of the federal poverty level;
  • Funding for full time staff to perform preadmission screening, resident review, and specialized services (when needed) to Nursing Home clients in the Residential Habilitation Centers.
  • Reimbursement for developmental and autism screening will be added to the Medicaid plan to assure that children with developmental delays are identified as soon as possible.
  • Hiring of additional Residential and Community Services investigators of supported living providers in order to improve the timeliness of investigations, which will be funded through a certification fee.
  • The Vulnerable Adults Incident Tracking system (TIVA) which will be  funded through the Roads to Community Living grant.
  • Development of the Community First Choice option Medicaid waiver which would result in the state receiving an additional 6% federal match for services provided to individuals with developmental disabilities and the elderly.  The savings could be re-invested in additional client services.
  • Capital Budget—Funding added to the Capital budget to make infrastructure repairs at Lakeland Village and Fircrest School.

It certainly appears to me that there is support from our Governor to ALL people with intellectual and developmental disabilities – from the young children to the elderly, from those at home to those in supported communities.

Please, encourage The ARC chapters to support a continuum of care, support ALL people with ID/DD and do not pit advocates against each other by spreading false information.  In order to improve the situation, we need to work TOGETHER!

Please do write, call, email, fax Governor Inslee to indicate your support for working together for the benefit of ALL

Call the Governor’s office at (360) 902-4111

Send an email to the Governor at https://fortress.wa.gov/es/governor/

Post a response on Governor Inslee’s Facebook page at https://www.facebook.com/WaStateGov

(You must have a Facebook account. Be sure to tag your legislators.)

Send a tweet (text message of 140 characters or less) to Governor Inslee’s Twitter at https://twitter.com/govinslee