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 Violation in Washington State

Washington State passed a law in 2011 which prohibits youth 21 and under from accessing needed supports in the ICF/ID.  This law is in direct conflict with Olmstead.  When I brought up the issues of choice with our then Department of Social and Health Services Secretary Susan Dreyfus, she responded “parents still have choice, they can send their child to another state if they want these services.”  Choice obviously means something different to her than it does to me and the many, many families who I come into contact with.

Two prolific researchers and authors on the issue of deinstitutionalization have written  “Almost all the studies cited earlier involved people with lower support needs, but individuals with severe disability likely do poorly given little support.  Where independent living had the best outcomes for those with mild/moderate ID, those with severe/profound disability achieved the poorest outcomes when living independently, and did better in supported living arrangements with more support.  {Gardner and Curran, 2005}.  Jones et al. {2001} found that the increase staff support for participation resulted in greater resident participation in activities.  However, the benefits were greater for individual with more severe disability.  So, while regularly undertaking activities independent of staff support is associated with skill development and achievement of personal outcomes for people with lower support needs, it is not for persons with severe disability, who instead require active support from caregivers for successful participation in meaningful activities.”

This is the problem that we will see more and more of as those who are still in the ICF/ID tend to be those with the highest support needs.  Our community service system is already struggling and breaking with the people they currently are attempting to serve.  It is documented not only here but throughout the ID research that the studies have predominantly been done looking only at those with lower support needs.  The outcome results from these studies cannot be applied to experiments that will be done with the population which has higher support needs.  This train wreck needs to stop before more of our loved ones are injured or killed.

Why, when a youth, age 19, is doing so well in the supportive community is our state denying him services and trying to boot him out to a community which cannot support him and keep him safe?  Makes NO sense at all.

OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), No. 98-536 (Supreme Court of The United States June 22, 1999).

Lakin, K. C., & Stancliffe, R. J. (2007). Residential Supports for Persons with Intellectual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 151-159.

Scattered, dispersed housing = Community?

A letter from the National Council on Disability (NCD) was published urging the US Housing and Urban Development (HUD) to swiftly comply with the US Supreme Court Decision of Olmstead.  This is great – except the interpretation of Olmstead is incorrect and the NCD assumes that independent choice is the apparent optimal  goal for people with intellectual disabilities (ID).

I cannot disagree more with the Federally funded National Council on Disability, which states they represent and advocate for our loved ones. My response letter is available  here.  (May 21 letter to HUD)  Community is not a place but relationships.  NCD does not consider relationships and what those relationships mean to many in supportive communities.

We need to define choice and what that means to various people.  Those with severe intellectual disabilities with or without co-occurring psychiatric disorders are by the very definition of their condition, not able to make informed choices.  If independent choice is the apparent goal, would an independent choice of someone with severe ID and psychiatric disorder by wise and safe?  I would tend to think not.

When thinking about choice and housing it is critical to understand what type of choice is desirable – independent or supported.  One should not presume that independent choice is always the most desirable outcome.  “A well-supported choice leading to selection of a wise alternative may be preferable to a more independent but ill-informed choice that results in problems.” (R.J. Stancliffe, 2011)

With this distinction about the definition of choice and what may be safe for each individual, we then can examine Olmstead and the arguments of many regarding community housing for those with ID.

The other very concerning issue other than that of “choice” is what about the caregiver.  Does the NCD not understand that many of these people who they so want to make independent choices often need 24 hour live in and AWAKE care?  If all these people choose to have their own house, who will be there to care for them?  Does the NCD not realize that we are already in a crisis trying to find qualified caregivers for those who may live in supported communities or group homes – how will we be able to safely staff isolated and dispersed homes?

Scattered and dispersed housing does not a community make!

NCD – Deinstitutionalization Delusions

Dear National Council on Disability,

As a healthcare professional and advocate for our most vulnerable citizens, I ask that the National Council on Disability rethink your position regarding deinstitutionalization.

The council is advocating for negligent care by pushing forward with deinstitutionalization.  Not only is this removing choice from these citizens (as guaranteed under the 1999 US Supreme Court Decision Olmstead) but also acting in violation of the US DD Act.

Supportive communities offer comprehensive care for our citizens with the highest support needs and most complex care.  These communities (which unenlightened or inimical people call institutions – I assume because they are unfamiliar with these communities or people who have their homes in these communities)  are homes to many of our loved ones.  Living in a community, sharing services and supports, is a very cost effective method to care for those who have a high cost of care.

Moving these people to dispersed homes, isolating them from family, friends, caregivers and healthcare providers in the name of “deinstitutionalization” makes a mockery of advocacy.  It is the exact opposite of what an advocate should do.

These dispersed homes often have unstable, inadequate staffing ratios and staff who are not trained well.  There is little coordination of care leaving the vulnerable person at higher risk for crisis care.  When care is finally given, generally these people have more advanced problems which require longer hospitalizations than if they had been managed with coordinated care which was accessible.  Promoting this type of “care” is promoting negligence.

When a person is totally dependent on another person (and often a paid provider) to provide all care a

nd assist in all activities, what happens when there is no provider who shows up to work? When an unfamiliar, untrained provider “fills in”? When the provider does not speak your language? What happens if a person wants to go outside or on a walk but there is not enough staff to go on an outing and also stay home to care for a housemate?  People become isolated and imprisoned.What happens is people do not see them anymore.  When our vulnerable citizens are not seen they are forgotten, the risk of abuse greatly increases.  When there is no one watching, no oversight, no one even knows they are there, people’s lives are destroyed.  This is what happens.

Is the deinstitutionalization movement aimed destroying these people’s lives one by one, hoping no one will notice?  If people who lived in a supportive community were dispersed, we wouldn’t have to see them or deal with them.  Is that what this is about?  It appears that way to me.

Supportive communities provide safe environments which are sustainable, employ a wide variety of profess

ionals who are specially trained and must meet annual standards of care.  There is oversight which is monitored and there are clear standards which must be met.  Why would one deny a person the right to safe, appropriate care?

Assuming dispersed homes are a better environment for many of these people is a false assumption

.  Take a tour of not only supportive communities but also dispersed homes, learn about the caregiving staff, learn about access and availability of healthcare, dental care, therapies, recreational and work opportunities before making a decision about what you think would be best for someone you do not know.  Listen to the people who know, love and care for these citizens.  They are the experts .  The experts are saying that we need supportive communities to best care for some of our citizens who are the most vulnerable.  Denying them this choice is not only inhumane but against our laws.

I know what I’m talking about.  My 18 year old son has thrived since being able to move to a supportive community at age 15.  He had been cycling in and out of the hospital with many complications due to a dual diagnosis of developmental disability and mania/psychosis.  Since moving to his community he has not been hospitalized once.  He has the supports he needs to be stable and he loves his home.

My son was honored as a member of the Shorecrest High School Homecoming Court this past Fall. (S

horeline Public School )   Far from being isolated he is well known in his community being very active in ma

ny recreational programs.  Living in a supportive community has enabled him to contribute, belong and participate in our community at large.

Thank you very much,

Cheryl Felak, RN, BSN

HOMECOMING 1

Because We Care – Beyond Inclusion

Attachment below  is just a “sample” list of actual citations from Licensed Adult Family Homes for p

eople with Developmental Disabilities in Washington State.  This list is FAR from complete and it is shameful the abuses and negligence which our citizens are subjected to.  It is very disturbing to know that this is probably only the tip of the iceberg and that many of these are repeat, uncorrected offenses with little or no punishment.

WA State Licensed Adult Homes for People with DD Citations 2011 adn 2012 Samples

 

Inclusion Delusion

Delusional thinking is taking over – what happened to logical thought processes and human dignity?  The National Council on Disability is  led by people who clearly do not understand the issues concerned with safely providing quality care to our most vulnerable citizens.  The policies the proscribe are not realistic and nor sustainable and will cause much harm to many.

 

Please read the most recent updates on this at The DD Newsblog.  The author there has written about this information very clearly and I recommend it for understanding of the situation.  My comments to the National Council will be forthcoming.

 

 

“unskilled minding”

Progress comes with problems which then need to be addressed.  This is the situation we are currently facing regarding issues of deinstitutionalization.  As with almost everything – there are few things that are ALL GOOD and few that are ALL BAD and this is the case here.  Unfortunately, many advocates have broken this issue into GOOD and BAD without looking at the “in-between”.

People need to realize that by the very nature of the disability “intellectual disability many need other people to help them make decisions on their behalf and their quality of life may depend crucially on the help of others.  Just because one is given choices does not mean that one is capable of making those choices, particularly when one does not have the skill or knowledge to understand the consequences or even a need to make a choice. Choice involves both opportunity and decision-making – freedom to choose, initiative to choose and the skills to choose.  (R.J. Stancliffe, 2011) Those who live in supported living homes are more likely to be vandalized or be exploited by those in the community – yet they have more choice.  Choice, without skills and knowledge is dangerous.  It is important to note that it should not be presumed that independent choice is always the most desirable outcome. (R.J. Stancliffe, 2011)

I believe we need to slow down on this process – not halt it, but take a step back and re-assess what we are doing here. What I have witnessed is an emphasis on quantity rather than quality just to get people out of the institutions, Simply moving people into dispersed homes and thinking progress is being made with deinstitutionalization is a sham.

What comes up again and again is staff support.  Trained, stable staff is the key to good outcomes.  Care providers need training and leadership yet this is not a priority. The lack of capacity leads to priority given to quantity of placements and not quality of placements.  When the funds are spent on the physical placements and not directed to staff training and support we end up with “unskilled minding.” (Mansell, 2006) We need funds to be directed to training in active support and other types of direct help which enable people – especially those with the most severe disabilities – to grow and develop as individuals and to engage in meaningful activities and relationships in their community (Mansell, 2006).”  Unfortunately, this is rare.

It is clear that those people with the highest support needs experience poorer outcomes than those who are more independent.  These people are also the generally the last to move to dispersed housing and they experience more difficulties living in the community at large and are the most at risk. Many of these people have challenging behaviors and need trained staff in safe ratios to care for them.  What happens is these people become isolated and imprisoned due to the lack of support.

What I do not understand is why, when we are facing a crisis situation in our dispersed housing communities, would advocates propose adding to that population without adding adequate supports?  You cannot simply put these people into dispersed homes without the support they need to maintain their quality of life.  This support also needs to be sustainable – not a one year grant.  When a person is totally dependent on another person to even go outside the house the quality of life is dependent on the quality of care and the staff ratios.

It’s also not just socialization but medical health which is affected by this movement.  Regardless of deinstitutionalization stage, important deficits in variables related to medical health were found in family homes and independent living arrangements (Anna P. Nieboer, 2011)

There is reluctance on the part of health care professionals and parent’s to move people to dispersed homes.  Even though there are studies which indicate community living can improve the lives of many people there continue to be many problems associated with negative outcomes. (R. Martenez-Leal, 2011) There are serious deficits and under-performance of outcomes in community-based services which need to be corrected.  Staff training, support and stability is a major issue. These issues need to be addressed and supported in order for families to health care professionals to proceed.

Looking at the care provided has disappeared as a priority in the deinstitutionalization movement.  Without our priorities changing, I’m afraid that more and more people will be isolated and abused for the sake of this movement.

We need to change the focus from looking at intentions and wishful thinking to looking at outcomes and results.

 

 

Bibliography

Anna P. Nieboer, V. P. (2011). Implementing Community Care for Poeple with Intellectual Disability: The role of Organization Characteristics and the Innovation’s Attributes. Journal of Applied Research in Intellectual Disabilities, 24, 370*380.

Mansell, J. (2006, June). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual & Developmental Disability, 65-76.

R. Martenez-Leal, L. S.-C.-d.-C. (2011, September). The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research, 55, 852-872.

R.J. Stancliffe, K. L. (2011). Choice of Living arrangements. Journal of Intellectual Disability Research, 55, 746-762.

 

 

 

Deinstitutionalization – a National Disgrace

Did you know that if a person has a developmental or intellectual disability they can have all the other diseases, illnesses and conditions that everyone else has?  I know this seems like common sense but at times I do not think that the Division of Developmental Disabilities  (DDD) understands this.  When it comes to the dual diagnosis of Intellectual Disability/Developmental Disability (ID/DD), as a cost saving measure for the DD Silo, DDD is booting out clients with DD who happen to have a mental illness.  DDD states that the problems are caused by the mental illness and not DD!

There are problems with service delivery within the DD system but from what I read and see these problems are not nearly as bad as in the mental health system.  So, rather than caring for these extremely vulnerable citizens in at least one system, they are being sent to a system which is much worse, where they will surely die.  Where is the humanity in this?

Right now there is a gentleman who is fighting for services.  He is 30 years old and has a history of developmental disability, he has been served all his life through DD and had a HCBS waiver to move into a supported living arrangement.  We all know that transitions are difficult and this transition caused a crisis.  This man is currently in the state mental hospital in the wing for people with DD.

Can you believe that our state made him ineligible for DD services stating he has a mental illness?  This man had an assessment done in March 2012.  One week the family received a notice, based on this assessment, that he was eligible for the CORE Waiver and listed all the services he would be getting.  The next week DDD sent them a notice (based on the very same assessment which qualified him!) terminating all services.  Is this how our state treats those in crisis?  They take away the services?

This is just one example.  I am contacting many families and we will be putting together our own report on our experiences.  It will be shocking.

Guns and Mental Illness written by New York Times Op-Ed Columnist Joe Nocera, spells out some critical information.

“”Ultimately, the article I wrote was about how the “deinstitutionalization movement” of the 1960s and early 1970s — a movement prompted by the same liberal impulses that gave us civil rights and women’s rights — had become a national disgrace.”

and

“The state and federal rules around mental illness are built upon a delusion: that the sickest among us should always be in control of their own treatment, and that deinstitutionalization is the more humane route. That is not always the case.”

The risks of deinstitutionalization (in both the DD and the Mental Health systems) greatly outweigh the benefits – it’s time the program planners and policymakers realized this truth.