Off Topic (But Not Really)

A physician I work with has been doing much research lately and he recommended a book  to read.  Even though this book has NOTHING to do with people who have intellectual/developmental disabilities or issues regarding advocacy for I/DD – it did have very relevant information regarding facts vs belief.

Over eighty years of scientific and peer reviewed research has been replicated and consistent.  The researchers agreed and still agree with the facts of the scientific research.  The problem though is that the “authorities” who make public policy came to believe something else and as a result, nothing else matters.  They either ignored or actively rejected the science because they didn’t like it.

Below is an excerpt from the book:

“Imagine you’re serving on a jury.  The defendant is accused of some heinous crime.  The prosecuting attorney has evidence that he says implicates the defendant beyond reasonable doubt.  He says the evidence is as clear as day and that you must vote to convict.  This criminal must be put beyond bars, you’re told, because he’s a threat to society.

The defense attorney is arguing just as vehemently that the evidence is not so clear-cut.  The defendant has an alibi, albeit not one that’s airtight.  There are fingerprints at the crime scene that don’t match the defendant’s.  He suggests the police may have mishandled the forensic evidence (the DNA and hair samples).  The defense argues that the case is not nearly as definitive as the prosecutor has led you to believe.  If you have reasonable doubt, as you should, you must acquit, he says.  If you put an innocent man behind bars, you’re told, not only do you do the person an incalculable injustice, but you leave the guilty party free to strike again.

In the jury room, your job is to assess the claims and counter-claims and make a decision based solely on the evidence.  It doesn’t matter what your inclinations might have been when the trial began.  It doesn’t matter whether you thought the defendant looked guilty or didn’t appear to be the kind of person who could commit such a horrible act.  All that matters is the evidence and whether or not it’s convincing.” (Taubes, 2010, p. 15)

In science and law, we are expected to ask questions, ask if the evidence actually supports what we are told to believe.  We can ask if we are hearing all the evidence or hand-picked and prejudiced evidence.  But unfortunately, in public policy, the expectations are not in line with science and law.  Many times public policy is based only on beliefs, beliefs which are not backed up by evidence but beliefs which many think are facts.

This is most unfortunate and harmful – this “sticking our heads in the sand” and pretending unsubstantiated beliefs are facts and making policy on these misguided beliefs.

Cognitive Dissonance is the name of the game in DD advocacy – how do we overcome this?

One would like to think that when presented with facts which would prove one wrong, one would be able to accept those facts and change one’s beliefs – but that’s not what happens.  When presented with contradictory facts from our beliefs we adhere even more strongly to our original belief.  Why is this?

How does one even get the facts “out there” for policy makers and administrators to examine when they already believe they have the facts?

The book I referenced and quoted from is:

Why we get fat and what to do about it/Gary Taubes.

Anchor ISBN 978-307-47425-4

 

link about “being wrong”

 

 

 

“Deathmaking”

I wrote the letter below to the National Council on Disabilities for their meeting this past week. In doing research for this, I came across much information on “Deathmaking” and am horrified by what I have been reading. But on the brightside, it has also led me to the works of Dr. Wolf Wolfensberger, Syracuse University and Social Role Valorization.  There is a wealth of information here which is critical to our understanding of living with people who have developmental disabilities.

Letter addressed to the National Council on Disability (December 4, 2013):

In the recommendations to close and consolidate the Intermediate Care Facilities, please keep in mind that these are medical/healthcare facilities. These medical facilities provide not only nursing and medical care but dental, psychological, education, vocational and social/recreational in addition to habilitation for building skills for activities of daily living.

The North American Industry Classification System (NAICS) is the standard used by Federal statistical agencies in classifying business establishments for the purpose of collecting, analyzing, and publishing statistical data related to the U.S. business economy. In reviewing the NAICS, it is clear that they have a better understanding of the supports and services needed by our citizens with developmental and intellectual disabilities than many organizations which claim to advocate for those with DD/ID. As you can see from the excerpt taken below from the NAICS website published by the U.S. Department of Commerce. (http://www.census.gov/eos/www/naics/)

“Sector 62 — Health Care and Social Assistance

The Sector as a Whole

The Health Care and Social Assistance sector comprises establishments providing health care and social assistance for individuals. The sector includes both health care and social assistance because it is sometimes difficult to distinguish between the boundaries of these two activities. The industries in this sector are arranged on a continuum starting with those establishments providing medical care exclusively, continuing with those providing health care and social assistance, and finally finishing with those providing only social assistance. The services provided by establishments in this sector are delivered by trained professionals. All industries in the sector share this commonality of process, namely, labor inputs of health practitioners or social workers with the requisite expertise. Many of the industries in the sector are defined based on the educational degree held by the practitioners included in the industry.”

What has happened is that those who claim to advocate for people with ID/DD have only looked at the social assistance and have ignored the healthcare aspects. As you can see from Sector 62, those with ID/DD are on a continuum and we must provide supports and services for ALL people on that continuum – not just those who are “higher functioning”

This method of advocacy is tantamount to a new genocide -or “deathmaking” as described by Wolf Wolfensberger (2005) . This means that denying access to needed healthcare, separating people from their homes and communities leaving them without help and protection, imposing a dying role on people or destroying their will to live are all examples of a “new genocide” which many are imposing upon our most vulnerable citizens.

This is a crime – please reconsider your policies regarding “deathmaking.”

When does “choice” mean “restriction”

Many things are changing in the name of “choice” but is this all really choice or is it putting more restrictions on people?

By micromanaging definition of words such as “community” and “employment” our government and advocates are actually reducing the alternatives by creating restrictions on how funds are spent.  Reducing alternatives which greatly benefit many of our loved ones means they lose the ability to make choices.

Having these strings attached to federal funds, funds which are critical to our most vulnerable citizens, forces them into situations which may not be in their best interest.  Is this what choice and alternatives are about?

The fact of the matter is that many do want to live in community settings with similar people, share supports and be able to walk independently outside their home to a friends, an event, or to shop. The other fact is that by eliminating “sheltered workshops”, without replacing with an alternative, forces the people who work in those jobs to be shuttered away in a home, isolated from their community.  Is this what choice is about?

Chris Collins, R-Clarence, represents the House of Representatives’ 27th District, which includes about half of Ontario County, New York, writes about this issue with regards to sheltered workshops.

“The federal government is not in a position to direct all disabled people to join competitive employment. Ultimately, the choice to stay in a workshop should be an employment option for the disabled who are not yet ready to make their transition to a competitive environment. Parents and providers are concerned about finding jobs in this tough economy, especially when non-disabled unemployment rates remain high and stagnant.”

Read more: http://www.websterpost.com/article/20131126/OPINION/131129736/?tag=1#ixzz2mH2WjH46

“Choice of employment” in this situation means the choice to not work since in reality many of these people would be unemployable in a competitive employment market.  There are not enough funds to provide the needed support for these folks to hold a job in a competitive job market and the reality of the situation is these folks will be left  with nothing – is that choice?

 

Please support real choice and real alternatives!

 

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.

Where is the choice? Where is the person-centered care?

The historic Olmstead Decision  “affirmed that the ADA requires states to provide services for people with disabilities in the “”most integrative setting appropriate” and that states are obligated to place people with disabilities in community settings when treatment professionals determine such settings are appropriate, the individuals themselves do not oppose such placement, and the state can reasonable accommodate community placement given its available resources” (Lakin & Stancliffe, 2007) (OLMSTEAD V. L. C. (98-536) 527 U.S. 581 (1999), 1999)

Washington State is practicing way outside these boundaries by passing laws prohibiting supportive community services to those under 21 regardless of the person’s assessed needs which may require intensive supports available ONLY in the supportive community.

Where is the choice?  Where is person centered care?  It is certainly not being practiced in the case before an Administrative Law Judge this week.  Read the case below, read the choices of the family, read the recommendations of the professional experts – all which indicate this 19 year old young man is stable, safe and has adapted well to his home in a supportive community.  Developmental Disabilities Administration (DDA) is continuing to deny long term admission to the chosen community where this 19 year old has lived for over one year.  DDA is using Roads to Community Living and a recent Washington State Law denying him permission to stay in his home while attempting to “build a home around him” in the community.

 

He already has a community where he is safe, stable and one which his family/guardian and care professionals agree is the best option for him in the least restrictive environment for him and one in which he is happy.  Where is the Person-Centered Care in the actions that DDA is taking?

Jack was admitted on “short term stay” in June 2012.  Jack transitioned very well, his medications were adjusted, he has 1:1 support, he has freedom to move about, he attends a local public school, his family is nearby and engaged, and Jack is happy.   Jack’s family has looked at over 10 “community” homes in the area, none of which would provide a safe environment for him.  Administrators in several Supported Living Agencies have told the mother that they would not be able to manage Jack with his needs.  The local Medical Expert in Autism who had managed Jack’s care prior to the short term stay for stabilization wrote that he had “run out of treatment options” for Jack.

When the short term stay was nearing 90 days, Jack’s mother was informed that Jack needed to leave this community.  Jacks mother had already seen there were no safe alternatives for Jack elsewhere and having already run out of treatment options by the experts in the community and fearing for Jack’s safety, she requested that Jack be allowed to be admitted on a long term basis to the supportive community which had served him very well.

Jack was denied.  An “exception to rule” was requested – this was denied.  Jack’s mother requested an administrative hearing.  After the hearing, the Administrative Law Judge stated that she did not know enough about the law to make a decision at that point.  She requested DDA to submit a proposal for supported living for Jack, share with the mother who would then write her comments, concerns and her proposal, which would then all be submitted to the judge.

The Administrative Hearing Manager wrote she objects the submission by Jack’ mother and has requested a post-hearing conference to discuss the Mother’s submissions.

It must be emphasized that Jack’s mother‘s concern is Jack’s SAFETY.  She has made this perfectly clear.  The Administrative Hearing Manager asked Jack’s mother “don’t you think you are asking for too much?’ to which Jack’s mother replied “Is Jack’s safety too much?”

Again, where is the choice?  Where is the Person-Centered Planning?  Where is the common sense? Where is the compassion?

 

To be continued. . .

 

Bibliography

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 Intellctual and Developmental Disabilities. Mental Retardation and Developmental Disabilities Research Reviews, 151-159.

 

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

Fact or Fiction Part 2

cost center

“Average” Daily Rates in Washington State for residents with Developmental

Disabilities who live in 4 types of Supportive Residential Care

Regarding the cost of care, it is clear that the comprehensive cost of the care of those with the highest support needs who choose the RHC is the most cost effective care.  As revealed in the report “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” (2011) residents in RHCs had significantly higher support needs than community residents.  The RHC residents were also significantly more likely to meet both extensive behavior and extensive medical support needs than residents in community residential programs.  “Our current findings suggest very clear difference in medical support needs, with those in RHCs being more likely to have high medical support needs than those in community residential programs.” (Barbara A. Lucenko, PhD and Lijann He, PhD, 2011)

 

This report also examined the DDD Acuity Scales and found that the residents in the RHCs also  had significantly higher support needs in interpersonal support, protective supervision and Activities of Daily Living (personal care, dressing, bathing, eating) in addition to medical and behavioral support needs. 

 

 

Looking at the daily cost of care in each cost center, it is also clear that there is much cost shifting in some areas which make it appear that the cost of care is less expensive.  This is the information that is often not shared when comparing costs.  It is also critical to look at the support needs of the residents in each setting, realizing that those in the RHC have significantly higher support needs and inherently higher costs related to the higher support need.

 

One other area that is misrepresented is that the “community” ICF/IDs offer the very same services as the state run supported communities of the RHCs.  It is clear by auditing their costs that this is not the case.  Knowing the high support need of the average RHC resident, it is very clear that this average RHC resident could not be safely and cost-effectively cared for in the “Community” ICF/ID since the comprehensive services are only available in the RHC. 

Please see this link below for a description of the cost centers and more information on the data 

 Average Daily Cost of Care

Bibliography

Barbara A. Lucenko, PhD and Lijann He, PhD. (2011, February). Assessment Findings for Person with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Retrieved from http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf

In Washington State the term Residential Habilitation Center (RHC) is inclusive of the ICF/ID and the specialized Nursing Facility.  The costs in these reports are only for the ICF/ID part of the RHC.