Preserve and build Respite and Crisis Stabilization

Time is running out – we need a YES Vote on SB 5243

 

save respite part 4 Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?

According to the Action Alert sent out by The Arc – Washington State they oppose this effort to preserve respite and crisis stabilization.  This bill is only aimed at preserving and building – not shutting down and limiting the few choices that our families have for respite and crisis stabilization.

It is time to question the motives of The Arc – Washington State and ask why they want to tear apart services.  Tearing down will only hurt those we are trying to help.

Please call the toll-free hotline at 1-800-562-6000 and ask your Senator to vote YES on SB 5243 – it is for the sake of our families!

Read the bill here and decide for yourself what is in the best interest of our families and community members in need of services.

(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

We need to provide choices – not restrictions

Please view the video which highlights the need for choices and options in our efforts to provide services and appropriate care and homes for those who live with intellectual and developmental disabilities.  This is one example of many that need to be options allowed and promoted.

 

 

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

The Arc wants to eliminate respite care

There is so much that does not make sense but one of the top things with advocacy for people with intellectual and developmental disabilities is that The Arc of Washington is against a bill which will continue to provide much needed respite care for people in our communities.

This graph illustrates the number of community clients who receive care at our state’s Residential Habilitation Centers (RHCs).  SB 5243 aims to maintain Yakima Valley School for residents and respite clients.  The Arc of Washington opposes this bill.  Yakima Valley School serves an average of 32 community clients per month for respite  – without this resource our community members will have much less access to the already minimal respite care available.

Community Respite in RHCs

The Arc of Washington supported the closure of Frances Haddon Morgan Center (FHMC) in 2011.  Frances Haddon Morgan Center had a well respected and much used respite program.  Since the closure of FHMC in 2011, it is clear that the need for respite in other RHCs increased.

Please support SB 5243 and help reverse some of the damage done by the bill in 2011 which caused at least one death and led many other people into crisis.   Advocates should be looking at care, protection, choice and progress – not the opposite.  In my experience, The Arc of Washington is not acting as an advocate.

 

Data Retrieved from Developmental Disabilities Administration

Executive Management Information System

June 2010 – June 2014

 

The count for respite clients for each month is the unduplicated count of clients who accessed respite for the month. 

 2015 Developmental Disabilities Bills of Interest – published by The Arc of Washington State

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

Centers of Excellence – change from the bottom up

We often hear about Centers of Excellence but what does this mean?

I think it should be fairly obvious but apparently it’s not.  For parents, family members, people with intellectual/developmental disabilities (IDD), advocates, community members, healthcare providers, vocational and recreational support people, it generally means a community which interacts and supports those with IDD in all aspects of their life in a manner which provides the best quality of life for that person.  It is a collaborative effort from all angles.

This can be done but for some reason, even though we hear about needing centers of excellence, they are being broken down rather than built up by the very agencies which should be supporting them.

Here in Washington State the Developmental Disabilities Administration recently proposed a “feasibility study” at the cost of $601,000 to actually dismantle much needed Nursing Facility for those with IDD which also provides respite for many across the state, evicting the current residents from their home to create a “Center of Excellence” which has a totally different definition than one would expect. There are so many things wrong with this proposal which was most likely generated by a recent court decisions regarding people with mental health issues and the fact that federal reimbursement for care is better in the Developmental Disabilities Arena than in the Mental Health Arena.

This proposal needs to be stopped before it goes any further, wasting our valuable funds on things when those critical funds could be used for so much better, actually providing services and supports utilizing existing resources and building up what we have rather than tearing down, dismantling and rebuilding programs which would actually provide less than what we currently have.  This makes no sense.

Our state has a history of doing just that.  In 2012 Frances Haddon Morgan Center was closed, a Residential Habilitation Center  (RHC)which was home to over 50 residents and provided much needed respite care.  FHMC was also situated on the western side of the state providing an alternative which was closer to many people’s homes of origin.  This was a huge political mess with much misinformation provided and believed by those who made the decision but the decision was made which The Arc, the Developmental Disabilities Council and others celebrated as a victory.

At least one young man’s life was lost as a direct result of this closure and many others were displaced more than once from one home to another.  This alone is inexcusable.  The other issue is the misinformation regarding “cost savings” and the fact that many now are being denied services which could have been provided if FHMC was still operational.  FHMC is currently just a building, empty, sitting unused for many reason – it is a shame to walk through the campus and know what good use it could if only it would be allowed to be utilized.  Families and communities are hurting due to this decision.

What did happen was that there was no cost savings at all – in fact, just the opposite.  Rather than building several crisis care centers located strategically around the state, there has been one center for youth which has can serve up to 3 youth at a time.

The program which was built to “replace” FHMC has been open since December 2012.  To date they have served 12 children, only one of whom returned to their family home (which was one goal of this program). The current cost of this program is $1,165 per day.

This is the program for which FHMC was shut down for – how many people are now going without help, are suffering in crisis due to this huge error on the part of some so-called advocates?

We can’t let history repeat itself yet that is exactly what this “feasibility study” is doing.  It must be stopped before it goes any further.  Let’s look at what a “Center of Excellence” really is and build these up with the resources and available space we have – it’s all there already – it just needs to be utilized appropriately.

 

DDA CenterofExcellence

 

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.