Protect Olmstead Report Language

Deinstitutionalization – The Committee notes the nationwide trend toward deinstitutionalization of patients with intellectual or developmental disabilities in favor of community-based settings.  The committee also notes that in Olmstead v. L.C. (1999), a majority of the Supreme Court held that the Americans with Disabilities Act does not condone or require removing individuals from institutional settings when they are unable to handle or benefit from a community-based setting, and that Federal law does not require the imposition of community-based treatment on patients who do not desire it.  The committee strongly urges the Department to factor the needs and desires of patients, their families, and caregivers, and the importance of affording patients the proper setting for their care, into its enforcement of the Americans with Disabilities Act.”

Although this language simply requires the Department of Justice to adhere to Olmstead when enforcing Olmstead, some federally-funded organizations that favor serving everyone in community settings without regard to individual choice and need, have somehow found this report language threatening and are now urging the Senate to reject it when it takes up the Senate Commerce, Justice and Science, and Related Agencies Appropriations bill as early as this coming Monday.”

Your letters and support are needed NOW to inform your Senators of this issue.  It is very simple – just follow this link:

VOR – Protect Olmstead Report Language

 

Please take action before it is too late!

THANK YOU!

 

Text above taken from the VOR website

Olmstead Celebration Event (celebration of the misinterpretation of Olmstead)

Olmstead Celebration

 

The invite reads:

 

“On June 22, 1999, the United States Supreme Court held in Olmstead v. L.C. that unjustified segregation of persons with disabilities constitutes discrimination in violation of title II of the Americans with Disabilities Act.  This landmark Supreme Court decision requires states to eliminate unnecessary segregation of persons with disabilities and to ensure that persons with disabilities receive services in the most integrated setting appropriate to their needs. ”

The Department of Health and Human Services and The Department of Justice need to read and understand what they, themselves have written:

 

eliminate UNNECESSARY segregation

receive services in the most integrated setting APPROPRIATE to their needs

Olmstead also guarantees INDIVIDUAL CHOICE 

Unfortunately, neither of these agencies understand what this means and use a heavy handed, judgmental approach to force people and evict people from their homes of their choice and needs – and they are doing this under the guise of Olmstead.

I know that I will be listening in to hear how they rationalize their harmful and draconian actions.

Here is the rest of the announcement:

In observance of this important milestone, please join senior officials from the U.S. Department of Health and Human Services (HHS), and the U.S. Department of Justice (DoJ) for a celebration of the Olmstead decision.  The event will also feature three panels of speakers on the past, present, and future of Olmstead as well as a screening of a DOJ-HHS video that includes testimonials from people whose lives were changed by the Olmstead decision.

Friday, June 20, 2014

Great Hall

Hubert H. Humphrey Building

200 Independence Avenue SW

Washington, DC 20201

1:00 p.m. – 2:30 p.m.

Please indicate your response to this invitation by contacting Evelyn Hernandez by email at Evelyn.Hernandez@acl.hhs.gov by June 13th.  Registration is required and space is limited.  If you have questions please call Evelyn at 202-357-3518. Please call if you require special accommodations.

For those not able to attend the event in person, HHS Live will carry the event live at http://www.hhs.gov/live/.

 

Olmstead_15th_Event_Invitation 

 

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

Thank you, Governor Inslee

Governor Inslee has recognized the great need for our citizens with intellectual disabilities.  Those of us who support a continuum of care, including the Residential Habilitation Centers (RHC), are greatly appreciative of the Governor’s understanding of the crisis and the need to support our most vulnerable citizens.

Currently there is a waiting list for youth and young adults to enter the RHCs in our state.  There are calls made frequently from the hospitals, looking for placements for these youth.  Finding no resources, the families continue in crisis mode, using a revolving door in and out of the hospital.  This is not a solution for anyone!

I am assuming that someone from the hospital administration or some families in crisis have alerted Governor Inlsee about these waiting lists.   I’m sure some of them are on the “no paid services” caseload too.  This is  not an “us versus them” issue as The Arc portrays it but an issue that we are all in together.  Why is that so hard for so many Arc followers to understand.  We want what is best for each person, no matter what their support needs are but also recognize that people have choices and there are cost constraints to our communities and state.

Why would we not utilize a cost effective community such as the RHC which actually does serve many needs of many people?  The Arc and others have not been able to prove that the costs for independent living would be less and the people would be safe and continue to receive life sustaining services if we consolidated the RHCs as they propose.   They have not shown where the services, which are included in the RHC package will be met nor how they will be paid for.  They have not shown how those who need 1:1 or 2:1 assistance will be able to be transported to frequent medical, dental or therapy appointments or how they will have the daily nursing care required to maintain their health or access for changes.  They have not indicated there will be adequate oversight or staff that is adequately trained to manage severe behavior or mental health issues.

Without looking at the whole picture, they cannot assume that these vulnerable people will be safe.

The track record actually proves the opposite – negligence and death have been too frequently reported for anyone to assume The Arc is aware of the dangers they will impose on the lives of those who are forced from their homes.  Again, this is not an “us” or “them” situation but a situation that we all must think of as a whole.   Why are we allowing an advocacy group to dictate what may be best for the good of the whole?  They are clearly misleading people by not looking at the reality of the situation and only the tip of the iceberg.

I would like to urge The Arc of Washington to take a lead from progressive chapters of the Arc.  For instance, The ARC Jacksonville has been looking at intentional neighborhoods and has successfully gained funding with housing tax credits, state funds and private funds to begin groundbreaking for The ARC Village project in the spring of 2014.  What a great effort in working together.  I would love to see our state emulate this cooperative advocacy.

http://www.arcjacksonville.org/village-on-hodges-planned-community/

While I support much of what The Arc advocates for I cannot support The Arc with the intentional efforts to hurt people.  These intentional actions which push harm to our most vulnerable citizens is immoral and unethical.  Until The ARC can work with all advocates in the continuum and realize that we are all in this together for the good of all, I’m afraid our citizens will continue in a state of crisis.  I, for one, would like to see the crisis subside not increase but I know that with the “us” versus “them” method, this will never happen.

Please for the sake of the whole and for an easing of the crisis, let’s take a lead from The ARC Jacksonville and look at new alternatives which may provide stability while providing safe, affordable care for our loved ones.

 

 

Mobility Park

We are on our way to major improvements for health, safety and community spirit building!

Please join the efforts in transforming the dangerous sidewalks in our community to a safe, welcoming, ADA accessible “pedestrian promenade.”

Our Campus Community is in great need of safe, ADA walkways.The campus is a beautiful setting and home to many of our loved ones with intellectual/developmental disabilities complicated by complex medical and/or behavioral concerns.

sidewalks 1

The sidewalks are left over from the 1940’s when this property was used for the Seattle Naval Hospital. The walkways are too narrow for 2 people to walk side by side and are dangerous for those who need assistance with mobility. There are many cracks, holes and uneven areas. Much has been spent on grinding surfaces over the years but this is only a band-aid “fix” to the problem of dangerous, non ADA compliant walkways.

sidewalks 6

http://www.gofundme.com/Fircrest-Mobility-Park

Given that this community is a community of people with disabilities, it is time that we supported the construction of ADA accommodations in the walkways on campus.

sidewalks 5

http://www.gofundme.com/Fircrest-Mobility-Park

Adding a pedestrian promenade will greatly enhance the life experience of our residents – we see it as a community connector and will be an invitation for them to get outside, walk, enjoy the sites and company of others and build community.

sidewalkes 3

http://www.gofundme.com/Fircrest-Mobility-Park

Please help us fund the survey and design for this much needed walkway.

sidewalks 4

http://www.gofundme.com/Fircrest-Mobility-Park

THANK YOU

 

Design Team:

We are building our design team.  Peggy Gaynor of GAYNOR, Inc. is providing landscape architectural design & consulting services on behalf of the project.  As soon as we have chosen our surveyor and/or civil engineer, we will publish their names as part of the professional design team also.

http://gaynorinc.com/design-philosophy/

 

Developmental Disabilities in Washington – First Flaw

Washington State Auditor’s Office published the Performance Audit “Developmental Disabilities in Washington:  Increasing Access and Equality”.  It is very unfortunate that the Auditor’s researchers did not understand the issues and what the data represented.  Many significant issues were left out or misrepresented in this report.   There are many flaws in this report.

First Flaw:

Data from the Research and Training Center on Community Living (Status and Trends Through 2010) were used for charts.

The Auditor’s report did not fully represent the data regarding people with ID/DD (Intellectual/Developmental Disabilities) served in settings of 16+ residents.  States have both state and private residential services and one needs to look at both types in order to compare services in various states.  Each state is different in how they manage their services.  Only looking at state services as the Auditor’s report does shows a very skewed representation of the real data.

The chart below is how the State Auditor represents that data:

Exhibit 7

The chart below is taken from the same report which the State Auditor used but has the full data regarding residential settings of 16+ residents on it – both state and private.  One can see there is a major difference in the appearance of the bar graph when one uses the full data.


16+ settings

The chart below is the same as the chart above but has the bars differentiating the state and private settings.

state and private

Auditor Charts

Auditor charts page 2

Bibliography

Kelly, Troy. (2013). Developmental Disabilities in Washington: Increasing Access and Equality. Performance Audit Report No. 1009938, Washington State Auditor.

Larson, S., Ryan, A., Salmi, P., Smith, D., & Wuorio, A. (2012). Residential Services for Persons with Developmental Disabilities: Status and Trends Through 2010. Research and Training Center on Community Living, Institute on Community Integration/UCEDD. Minneapolis: University of Minnesota.

How do I spell relief?

C-A-R-E-G-I-V-E-R

 

Recently I was asked to write an article for Frontline Initiative, a publication of the National Alliance for Direct Support Professionals.  The specifics of this issue are “Psychiatric disabilities and intellectual or developmental disabilities”  – an area that I am very familiar with.

 

Today, I received my hard copies in the mail and would like to share my story of thanksgiving about two wonderful people (and their wonderful spouses) who “get” my son!

 

Frontline Initiative article by Cheryl Felak

Gretchen and Kelly came from Spokane and visited Thomas - This is after their trip to Red Robin for lunch!

Gretchen and Kelly came from Spokane and visited Thomas – This is after their trip to Red Robin for lunch!

 

 

???????????????????

Gretchen and Thomas (maybe 2010?)

Kelly and T - 15 years

 

 

Kelly and Thomas at Thomas’ 15th Birthday Party – which also happened to be Mardi Gras that year!

Alex and Thomas Christmas 2010

Thomas and Alex at Christmas Eve Dinner Celebration 2010

Alex included Thomas in his wedding by asking Thomas to announce the closing Hymn.

“Lord of the Dance”

http://www.youtube.com/watch?v=6V9YTfqOrrU&feature=youtu.be

Thomas and James at Alexes wedding

 

Thomas getting ready to make his closing hymn announcement at Alex and Maria’s wedding, June 16, 2012

 

Families with younger children and teens – protect their choice!

I am writing as a parent concerned for other families who will loose their choice of community settings.  The definition of community is going to be restricted by an artificial definition specifically for those with intellectual disabilities (ID).  People with ID will not be able to choose where they want to live, will not be able to live in any supportive community, inclusive community, within walking distance to other people with ID with the definition that is being considered.  The “community” for people with ID will be isolated and dispersed housing making it virtually impossible for many to congregate and meet other people.  This is called “inclusion” but I call it “inclusion delusion.”

It is extremely unfortunate that many families are loosing this choice and are not even aware of their loss.  It is being decided for them by those who are misguided with policies regarding the Olmstead decision.  Rather than being allowed to be informed and make their own choices, our government is in the process of destroying communities which are safe, stable and sustainable so these families with younger children will never know what they are being denied.

Today, I met with a mom and her 15 year old son.  She asked me how she can look into having her son live at the supportive community where my son lives.  She said that she had asked the case manager who told her that she would not want or need to look into this community.  Developmental Disability Administration (DDA) does all it can to keep people out, even those who are so desperately asking to  access these needed services.

What was interesting is that this mom knew intuitively that the supportive community would be a much better place for her son than a dispersed home.  She said her son would just be sitting at home all day but with this campus there is so much to do and one can go out and walk and not be stuck inside until the staff was willing or able to take them out.  I told her that we really need to hear from people like her, people who have their children at home but know that they will need more help in the future.  These are the people we need to have write letters and contact our legislators, they are the ones that we need to stand up and speak at The Arc meetings, these are the ones that we need to support so that they will have support and choice in the future.

The more people we have come visit the supportive community, the more support we will have for true choice as outlined in Olmstead.

 

Ravanswold flier – a type of supportive community

Tierra Village

 

LTO Ventures lists “Communities to Know” at this link:

http://ltoventures.org/communities-to-watch/

This will give you a good description of supportive communities which are sprouting up to care for our loved ones.

 

 

 

The Arc National Convention

This year The Arc is having their national convention close to my home and I will be able to attend.  I am hoping to learn much and network with many to help support a continuum of care service model.  I realize I will be in the minority but my hope is to spread the word about supportive communities and the benefits these communities provide to not only the residents but our society as a whole.

Unfortunately, the cost of registration is way beyond my budget and I have only registered for one day and the research luncheon.  This alone is $200.00.  My hope is to have some help from others – every dollar helps – no donation is too small – to bring the registration fee into a more manageable zone.

If you would like to help with my cause to donate to my registration fee, you can go to this link and donate there.  Every donation is so much appreciated!

Donation Page at Go Fund Me for The Arc National Convention in Bellevue, WA

Closing Institutions

Many of our supportive communities are being destroyed.  People are being evicted from their homes and dispersed to isolated housing in the name of “inclusion.”  The reason this is happening is because people and agencies are being misguided with inaccurate information, both with regards to costs and with respect to the 1999 US Supreme Court Decision Olmstead.

It is for this reason that I am providing this information in my attempts to clarify what the costs are and what choice means to those of us who care for our loved ones who have  limited abilities to make their own safe choices.

When looking at costs, direct care costs are the most logical cost to compare since this is a cost that is needed in all types of supportive residential settings.  This is the basic cost and the one that is most often reported for the cost of care in community residential settings.  The costs reported for supportive communities (Intermediate Care Facilitates/Intellectual Disabilities (ICF/ID), Nursing Facility/Intellectual Disability (NF/ID) and Residential Habilitation Centers (RHC) ) are generally very comprehensive costs and by the very definition will be more expensive than the direct care costs reported for community settings.  Below are the lists of services that are included in the comprehensive costs for the supportive communities.

Looking at only direct care costs across many residential settings and support needs – there are two very clear facts that can be seen:

1.  The cost of care increases as the support needs for the person increases – those needing more support have a higher cost for direct care.

2.  The Economies of Scale come into play – in supportive communities, even when the support needs are high, the cost of direct care is lower per person, on average, than in isolated homes.

In Washington State, this became especially evident with the closing of Frances Haddon Morgan Center, one of our state’s RHCs.  In addition to looking at the Economies of Scale in action with the downsizing and closure of one of our RHCS, we were also able to obtain the average daily cost of care for community residents with the highest support needs. The chart below illustrates that as the size of community decreases, the average cost per resident for care increases.

economies of scale

2010 direct care costs

2011 direct care costs

2012 direct care costs

The cost difference between 49 residents and 9 residents for Frances Haddon Morgan Center is astounding.  Moving these residents from their homes proved disastrous for several of these residents, death to one, hospitalizations and crisis to others – all for what was assumed to be a cost saving measure.  This experiment failed on many levels.  It’s time to actually look at the real data, understand what the data represents and move forward.

cost centers 1 cost cetners 2