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

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

“Real Life”

In a recent thread in the LinkedIn group “Intellectual Disabilities Support Professionals” there has been a heated “discussion” regarding inclusion.  There is one very outspoken and prolific writer who regards anything but independent living supported by his agency as being “groomed for a systems lifestyle” to be “segregated, isolated and warehoused in institutions”  He calls himself an advocate but has disdain for anyone one who needs extra supports which may not be available in his type of community.  He refers to people who have higher support needs as not having “real lives” because they may live in a supportive community, an intermediate care facility, or group home.  He refuses to listen to others and abrasively dismisses any viewpoint other than his own and that of his agency.  Needless to say, his writings are tiresome, repetitive, derogatory, one-sided and void of understanding of the complexity of the “real” situation.

It’s really a shame because this person is passionate about his advocacy but is unable to see or appreciate alternatives and the fact that the population of people with intellectual disabilities is very heterogeneous.  The researchers are now beginning to realize that “one size does not fit all” and most of the research has focused on those who have a fairly good command of language complexities and those who only have a developmental disability not people with  intellectual disabilities.

“Operational definitions of self-determination have moved beyond simplistic versions that focused almost solely on choice making to take into account cultural differences and the fact that different people desire to have differing amounts of personal control over specific areas of life that they view as important.” ( Wehmeyer and Abery, 2013)  These authors also point out that future research needs to better account for the fact that self-determination “is exercised within the context of relationships (with people, organizations, systems, etc.) and that as a result, relationship factors need to be taken in to account.”

My son Thomas is 20 years old and lives in a supportive community which many would call an “institution”.  He calls it home.

Thomas is very self-determined making many choices which are important to him.  He lives in the community in which he grew up and enjoys events all around the region.  He is extremely good at planning what he wants to do and filling us all in on the local events around town.  He is a wealth of information.

 It’s absurd to think that Thomas doesn’t live a “real life”

The LinkedIn writer I spoke about says that people in institutions are groomed for systemic segregation, are warehoused and isolated never to be seen again – he certainly has no idea about “real life”

Below are photos from just a few of the choices that Thomas has made this summer

Thomas attends mass weekly at Blessed Sacrament Church in Seattle, Washington.  He was baptized in this church and has gone here his whole life.

Thomas at mass

Thomas at Blessed Sacrament

Thomas attended a Mariner’s game and had to get his photo take with the Dave Niehaus statue

Thomas at the Mariner's game with Dave Niehaus statue

Thomas met with two of his most favorite people – his friends Gretchen and Kelly

Thomas with Gretchen and Kelly

Thomas loves to go out to eat – he has chosen Kidd Valley, The Northgate Food Court,  Piroshky Piroshky, Taco del Mar and Panda Express as his most frequent places this summer

Thomas at Kidd Valley Eating at Northgate Mall - Piroshky Piroshky

He attended the “Sounds of Summer” concerts at University Village – something he does every summer.  He is well recognized there as he is the first one up to dance and chats with the band members.

Thomas at Eldridge Gravy and the Court SurpremeThomas at Hit Explosion

Thomas at University Village

Here are some video clips of parts of the concerts

He attended day camp at Woodland Park through the Seattle Parks – another annual favorite!

Daycamp 2014

iphone august 2 022

and he organized an “All Star” Pizza Party  at our house

Thomas clapping for All Stars Thomas at All Star Party

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.

 

 

Where is the community support?

Our state (Washington) is really doing a horrible job of taking care or our most needy  citizens.  Even though it is written in our constitution to foster and support care, the care has been denied through legislation.  I wonder if our legislators and so-called advocates have read the  Washington State Constitution, specifically Article XIII.  If not, now may bee a good time to read and understand.

With the recent unanimous Washington Supreme Court ruling regarding “boarding” of mental health patients in hospital emergency room as unlawful I hope that the lack of care for our citizens with intellectual disabilities will also be scrutinized by our courts.

The legislature has continued to reduce care and supports for the people who are most in need.  We have heard that closing and down-sizing facilities which specialize in caring for people with high support needs will save our state money – but does it? Even it it did save money, which is highly doubtful when looking at the budget as a whole, was it the ethical and moral decision to make?  Was it ethical and moral to deny people safe and skilled care they need to survive?

We are currently in a horrible crisis – not necessarily due to lack of space but due to lack of support by our legislature.  These services are controlled by our legislature and because of bad and poorly thought out decisions, critical services have closed and there has been no replacement or alternative.  People and families are being destroyed due to these decisions while residential buildings sit empty because they are not funded to provide caregivers for people in crisis.

For instance, we had one Intermediate Care Facility for people with Intellectual Disabilities which served over 60 people and also managed to provide crisis respite for children and adults.  Frances Haddon Morgan Center closed with promises of more community options.  Where are these options?  They have not materialized at all.   Was this a wise decision?  Not in my opinion and in the opinion of many others.

Currently we have many people in crisis asking for residential care and again, even though they see beautiful, remodeled homes on campus settings with trained, stable staff and supports, they are forbidden to access this care.

I would like to see every legislator take a tour of Fircrest Residential Habilitation Center in Shoreline, take a look at the empty duplex on this beautiful campus then listen to the stories of people in our community in crisis who have requested respite and admission and have been told “no – we have no space.”  After this experience, I would then like to hear your recommendation to the other legislators on what we should do to minimize the crisis to our families and support our communities.

 

Activist or Advocate?

I was a member of the Facebook group “Seattle Disability Community Outreach” until yesterday when I was deleted as a member.  I had posted several issues previously and never had a problem  and it surprised me that my recent posting “No Room” sparked such militant responses.

This brought up the issue that I have often wrestled with – am I an activist or an advocate – some definitions I find of these two words indicate that the words are synonymous but are they really?

After reading the comments by some members of the Seattle Disability Community Outreach and a description that they are “disability activists” I know that I am not an activist by their definition.  I do not understand their type of “activism” because to me it denies people individualized choices  – apparently these activist want to make decisions for everyone based on what these activists believe is right.  There is no opportunity for discussion or understanding of various needs.


The other issue is the continued referral to the Olmstead decision with regards to institutionalization. I doubt if these people have actually read the U.S. Supreme Court Decision because it does not say to close all institutions – in fact it states that some people will always need that level of care. What Olmstead REALLY says is that people are individuals and they should be allowed their choice – not be forced into what others think they should have – so, in my interpretation of that, these so-called “activists” violate the very decision they think they are quoting.

I realize that this group does not advocate for a continuum of needs nor do they as a group realize that people have different support needs and choices.

I did write the following letter to the 4 moderators of the group – since I am no longer a member I can not comment and try to respond to those who are so adamant against choice and individual rights.

Hello,

It appears that I have been deleted from “membership” to the Seattle Disability Community Outreach page.

There was a posting that I had regarding “no room” which was militantly opposed to by some members. This is such a shame that activists are so dogmatic in their beliefs that they cannot understand that there are a variety of needs and choices.

Referring to Olmstead is in fact needed – but it’s also important to know what the Olmstead decision really says – It upholds the civil rights and choices – not denying choices. Nowhere in Olmstead does it say to close institutions either.

The fact that a dialogue cannot ensue and the same rhetoric is heard over and over with no accurate data only adds to the violation of rights of our most vulnerable citizens.

Maybe the Seattle Disability Community Outreach group does not advocate for those with intellectual disabilities?

Yes, I know that many, many people were sent to institutions and many, many people did not need to be there – that does not negate the fact that we still do have people with extremely high support needs who need to be cared for. Some of these do choose to live in a campus community. This in no way means that they are not included in everyday life – in fact many have extremely active social lives on and off campus.

Referring to articles of over 20 years ago as “proof” does nothing. There are countless articles about abuse in every setting – but if one did research one would realize that there is much better oversight in supportive communities than in scattered and isolated homes.

I’m saddened by the lack of awareness of these members who wrote – maybe they are not aware of the many families in our area who are in crisis trying to care for their young adult children with severe intellectual disabilities – many who also have some form of mental illness. Sure, it would be nice to have their own home and have stable caregivers but our society does not respect these much needed caregivers and the staffing turnover is over 40% in many of these homes.

For people who cannot dress themselves, cannot cross a street, cannot be safe without every door and window locked for various reasons and need to have 1:1 or 2:1 staffing to maintain safety without restrictions, sometimes the campus setting is the least restrictive and when people are militant about “community” they do not understand the issues of some or our most vulnerable citizens.

As an advocate it upsets me to see others advocate against safe and appropriate care only because the setting was not right for them. It’s time to really uphold the Olmstead decision and allow choice and individual rights and access to safe care.

I am sending this to all four of the moderators of this group. Share if you like with the membership. I would be more than glad to share original documents regarding cost of care, safety of care and appropriate care.

Thank you,
Cheryl Felak, RN, BSN
Coalition for Community Choice
Developmental Disability Nursing Association
American Association of Intellectual and Developmental Disabilities

 

“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