Is this “Community Inclusion?”

Seven months of trauma/crisis care and the crisis continues.

Kevin on a rid

Kevin is 26 years old and autistic.  He had been living in a supported living group home for 4 years after living at Fircrest for several years.  He started to have some behaviour issues develop in August 2018.  His psychiatrist attempted to adjust his medications but there were no positive results.  It was discovered that Kevin had elevated ammonia levels due to medication and this is what instigated the behaviour changes.

These behavior changes caused Kevin to assault his caregivers and a housemate.  The police were called, Kevin was handcuffed and taken to the hospital ER several times in the first 3 months of these changes. In November 2018, Kevin was hospitalized for 5 days due to self-injurious behaviors.  He then returned to his group home.

Two month later, on January 7, 2019, Kevin became anxious, hit a caregiver and a housemate – police were called and again Kevin was handcuffed and taken to the Secure Emergency Care Unit (SECU) .  Kevin was in a room with 4 other patients in the SECU – a unit that is critically important for the healthcare of our community but not the place to hospitalize an anxious person with autism. Kevin was very, very upset, cried and wanted to go home.  The group home stated that he was not allowed to return.

Kevin’s family took him to their family home but within 2 days Kevin became more and more upset because he wanted to go to HIS HOME.  His parents were unable to calm Kevin down and they were forced to call 911 for assistance.  Kevin again went back to the SECU for a night before he was transferred to a medical unit where he stayed from January 10, 2019 through February 20, 2019 when Kevin’s family was so devastated by the trauma he was experienced by being restrained chemically and physically in the hospital they attempted to take him home.

The home visit started out well but within a couple of days, Kevin became more and more anxious, wanting to go back to HIS HOME.

“The owners of the group home came yesterday and I think he was thinking he was going to his group home yesterday or today and that took him to the breaking point. No big changes, he just doesn’t want to be here anymore. He asked for his favorite caregiver all the time.

We just don’t know what else to do. It is such a sad situation. The group home owners told us they don’t want Kevin back until he gets his medications and behaviors fixed by the Fircrest team. DDA people are telling us there are no beds. Kevin is trapped in this mess and his father and I don’t know how to help him anymore!! 😢

Kevin again was admitted to the SECU about February 27, 2019 where he remains today.

The plan that DDA has come up with now is to find a place to have a respite bed and Kevin will be able to stay there from March 11 – March 28, while DDA helps the group home look for a house.  If Kevin does not have any behavior issues during this time he will be able to go to the new house if it is ready – if not, well – let’s not go there and let’s assume DDA will be able to provide the community supports that Kevin needs.
Kevin mowing the lawn

Please put pressure on our legislators to fund community supports – years of cuts in addition to understaffing and underpaying caregivers in addition to greatly underestimating the necessary funding for services and supports has led our state (and others) on a rapid downward spiral.

It’s time to pull ourselves out of this mess, understand the choices and needs of those we support and be realistic with funds and services.

 

Happy ADA Anniversary – DDC Interview tomorrow!

ON this eve of my interview with the Washington State Developmental Disabilities Council I am thinking of all the people who are not able to have their voices heard.  My hope is that the DDC does uphold the 1999 US Supreme Court Decision Olmstead v. L.C. and that they do honor person centered planning.

My hope is that they understand that “inclusion” is defined by the person and what is optimal for that person.  This has been a very difficult concept for many to understand.  Also, we need to take into consideration all the caregivers and support people and what “inclusion” means for them too.  We are all in this together and we need to work together for what is best for the whole.  Not everyone is going to get their way with everything but that does not mean that there are not success stories.

Updates after the interview –

Please support respite and crisis care

Clients & Families can’t wait another year for help. Most of us have been in the position of having to wait for services….let’s try to cut the wait time for others.

Now is the time to write the members of the House Committee on Early Learning & Human Services.  They are having an executive session on Thursday March 26, 2015.

It is very important that the YVS  (E2SSB 5243)bill be sent moved on. If it does not pass out of committee (Executive Session) it is delayed another year.

This bill will help reverse some of the damage and lost respite care from 2011 when the legislature decided to close Frances Haddon Morgan Center.

Bill information:  http://app.leg.wa.gov/billinfo/summary.aspx?year=2015&bill=5243

Please send comments of support for the bill E2SSB 5243 to the following House Committee Members:

PLEASE~If you have not as yet contacted Early Learning & Human Services Committee in the House regarding E2SSB 5243, please do so now.

You can call their office, or the Legislative Hotline at 800.562.6000 or email them.

Ruth Kagi, Chair                                                          ruth.kagi@leg.wa.gov                         District 32        (360) 786-7910

Brady Walkinshaw, Vice Chair                                    brady.walkinshaw@leg.wa.gov            District 43        (360) 786-7826

Maureen Walsh, Ranking Minority Member                maureen.walsh@leg.wa.gov               District 16        (360) 786-7836

Elizabeth Scott, Asst Ranking Minority Member         elizabeth.scott@leg.wa.gov                District 39        (360) 786-7816

Tom Dent,                                                                   tom.dent@leg.wa.gov                         District 13        (360) 786-7932

Brad Hawkins,                                                             brad.hawkins@leg.wa.gov                  District 12        (360) 786-7832

Christine Kilduff,                                                          christine.kilduff@leg.wa.gov               District 28        (360) 786-7958

Bob McCaslin,                                                             bob.mccaslin@leg.wa.gov                  District 4          (360) 786-7820

Lillian Ortiz-Self,                                                          lillian.ortiz-self@leg.wa.gov                 District 21        (360) 786-7972

David Sawyer,                                                             david.sawyer@leg.wa.gov                  District 29        (360) 786-7906

Tana Senn,                                                                 tana.senn@leg.wa.gov                       District 41        (360) 786-7894

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

“No Room?”

The list of words below is taken directly from the Developmental Disabilities Administration Vision, Mission and Values Statements:

Supporting Individuals – Continually improving supports – Individualizing supports – Building support plans based on needs – Engaging Individuals and families – transforming lives – Respect – Person Centered Planning – Partnerships – Community Participation – Innovation

I wonder why these concepts are violated by the very agency to which they belong and the agency which is there to build and sustain supports for our citizens with intellectual disabilities.

Currently, we have people in crisis in our local community who are eligible for and have requested emergent admission to the local Residential Habilitation Center, Fircrest (RHC).  The request was denied based on “no room” and the department is working hard, against the choices of the individual, her family and her guardians, to “divert” her to “community” homes which are not safe or appropriate for her needs or ship her away to the RHCs far from her family and community.  How do these actions fit in with the vision of the department?

Fircrest Institutional campus

These actions are not unique to the individual mentioned.  This is how the department chooses to manage the choices and requests of those with high support needs who request the supports and services available at the RHCs.  We hear that people do not want these supports and services, but this is not the real story of what is happening behind closed doors.

These photos below were taken August 1, 2014 showing a fully remodeled and empty unit which could house up to 16 people who need supports and services.  These are at the very RHC which the department states “no room”.  If we were allowed to utilize these units on campus we would not only be providing much-needed services to individual and their families but also being good stewards of our public resources.

open room 1 oepn roomopen kitcen

There is no reason people who need the level of supports in the RHC are denied due to “no room.” 

It is simply not true.

Please help us  utilize the resources we have.

 

By utilizing the resources we have we can help prevent crisis and trauma to people and their families.  We can support stability in people’s lives and have sustainable programs – if we were only allowed to do it.

The restrictions being forced upon people with intellectual disabilities are limiting their choices by making false assumptions about what people need and want.

Help us to hold the Developmental Disabilities Administration accountable to their own Vision, Mission and Values Statements!

DDA mission and vision

Sylvia’s comments and thoughts shared

Sylvia Fuerstenburg, Executive Director of The Arc of King County, has again written an essay regarding the advocacy of The Arc for people against the right to live in supportive communities.   I just cannot wrap my brain around how an advocacy group, which receives thousands of dollars of public funds each year, is allowed to openly discriminate against a segment of the population which they are PAID to advocate for.  They clearly do not understand the situations of those who have homes in supportive communities and do not seem to realize that moving many of these people from their chosen communities and homes will only increase the crisis to the community as a whole.

Below is my letter to Ms. Fuerstenburg and Mr. Lance Morehouse, the Outreach and Advocacy Coordinator for King County Parent Coalition:  Please send your comments also.  I do not think that my comment will be published given past history of The Arc blocking critical information for families regarding supportive communities. but I keep trying to get through.

Dear Sylvia and Lance,

I would appreciate the opportunity to make a comment regarding your letter in the December Newsletter.  I do hope that my comments will be available for all to read and discuss.

I wholly support the mission of The Arc to advocate for people to live in the community of their choosing.  “The Arc believes that all people, regardless of the severity of their disability, can live successfully in the community with individualized and appropriate supports.”  I think that all advocates believe this – the problem is finding funding and maintaining a stable, qualified support staff as caregivers for those who need supports.

Do you listen to the people in the community talk about the difficulty they have in finding even someone to provide a couple of hours of respite?  Do you read about the very high staffing turnover of caregivers in community homes (up to 45% in some areas).  Do you listen to families of people living in family homes about how many caregivers they interview and hire each year to help with caregiving in the home?   Do you hear the parents who cannot work or who have lost their job because they have used too much “sick” time because they cannot get another caregiver?  Do you hear the families who are bankrupt or struggling financially because they cannot get help caring for their child?  Do you hear the families who use the ER or have to have their child admitted to the hospital for crisis care – the only “respite” those families receive?

It does not appear that The Arc hears these voices – if you did, it would be negligent to increase capacity of this residential population, particularly of those who need high supports, which would then over-tax an already under-funded and under-staffed community residential service system.

I have never heard that one is “too disabled to live in the community” from a person who advocates for a continuum of care, including living in a supportive community.  You’re right, no one is “too disabled” but there are people who do require a team of support people to keep them safe and healthy.  Sure, with unlimited funds, everyone could live in a residential neighborhood – but that is not the reality.  Our funds are limited.

As Lance said in the October 23, 2012 DD Task Force meeting, his son was able to live at home for 17 years with the help of 19 hours a day of licensed nursing care.   I’m very happy that their family had this opportunity but this is not a cost effective system to manage a large number of people who may need this level of nursing and caretaking support.  If all those in the supportive communities chose to live in a neighborhood residential home and required this high level of support to survive, would our state be able to financially handle that?  I know it wouldn’t.  So why then, does The Arc advocate for this type of residential service (which is clearly more expensive than a supportive community) and then say that those in the supportive community are taking more than their share?

It should really be the opposite – our state should be thanking those who choose to share services, and thanking those who choose to live in a supportive community home for many reasons.  These communities have a track record of having a more stable workforce and the fact that many services can be shared among residents is much more cost effective system for those with high support needs.

These supportive communities are far from segregated – in fact, most of the residents who have homes in these communities are out shopping, going to school, participating in parks events, go to church, attend neighborhood and city functions and more.  You just may not be aware of them because they have the support that they need to be out and about – unlike people locked away in their “community residential” home because a caregiver did not show up for work or the staff is untrained in behavior management and therefore unable to take the resident out of the house, or some other reason.

Living in a supportive community allows one more freedom.  Many of our citizens of all ages and types voluntarily choose to live in some sort of supportive community for various reasons.  Why are our citizens with ID/D being denied this right to choose which community is best for them?  Isn’t this discrimination against them due to their disability?  Isn’t the Arc against that type of discrimination?  Apparently not since The Arc advocates, and uses public funds, to do just that – discriminate against our most vulnerable.

It’s time for a change – let people have the choice – true choice – give them the information, allow them to decide what is best for them.

Thank you,

Cheryl Felak, RN, BSN

Photo and link from

December 2012 Newsletter

 http://hosted.verticalresponse.com/437417/c96b185e8e/1461566135/cdb5bffe12/

The Arc o f King County receives publlic funds from King County and Washington State to share information and advocate for individuals with DD

The Arc o f King County receives public funds from King County and Washington State to share information and advocate for individuals with DD