Seattle Children’s Autism Blog

A very timely blog posting by Lynn Vigo, MSW, LICSW from Seattle Children’s “The Autism Blog.”

I can’t help but think that this is in connection to the King 5 Investigation series by Susannah Frame – if it wasn’t ment to be, it sure hits the nail on the head.    Thank you, Lynn!

I’m so confused

“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.

 

 

 

Formation of Washington State Task Force to Look at DDD Services

Attached below is my letter to Don Clintsman, Assistant Director, Division of Developmental Disabilities.  He had responded to a letter which I had written to MaryAnne Lindeblad, Assistant Secretary, Aging and Disabilities Service Administration, inquiring about the formation of the Task Force and the importance for a balanced perspective of the participants.

Dear Mr. Clintsman,

 

Thank you for responding to my letter to Ms. Lindebland.  It is hopeful to hear that the The Department of Social and Health Services and the Department of Developmental Disabilities finally understand the concept of and have adopted the term “continuum of care.”

 

We, as grassroots disability advocates have always stressed the importance of the continuum of care, realizing that each person needs to be looked at individually and their needs met according to their assessed support needs.  The only way to accomplish this goal and also accomplish it within a reasonable budget is to continue to offer the full continuum of care to all – regardless of their age group.

 

Once one realizes the critical importance of this continuum, I’m hoping that the budget figures and reports will more accurately be reported to reflect the true cost of care – especially for our most vulnerable citizens and those with high acuity levels in several areas. 

 

It has never been disputed that citizens with high acuity can be accommodated in neighborhood communities and it’s wonderful that this arrangement can work for many.  It is neither realistic nor safe to consider this the best option or even a viable option for many of our citizens who currently reside in the state operated residential communities or those who have requested admittance but have been denied access to these communities. 

 

Given the many constraints of resources – not only dollars – but people and housing, it only makes economic sense to utilize the concept of “scale of economies.”  This concept utilizes the fact that being able to serve more people with the same type of support needs and sharing some of those services within a community actually saves dollars.  Within these communities, the residents also receive their comprehensive health care – minimizing many transportation costs, emergency back up costs, and extra personnel costs used to transport residents to other appointments just to highlight a few examples of costs which are often forgotten.   The residents have much better preventative care and follow-up care, are not traumatized by being “taxied” around town for various appointments such as lab draws, xrays, dental exams, eyeglass fittings, etc. 

 

I will highlight one example of a woman in her mid 30’s.  She lives in a supported living arrangement, has cancer and many other health related problems.  She came through the department in which I work to have her port-a-cath changed due to mismanagement and infection.  This is very unusual to need a port-a-cath replaced, particularly if the first one has only been in a short while.   This woman presented in surgery, unaccompanied by a guardian, unable to comprehend all that was going on.  She had missed many of her scheduled doctor’s appointments related to not only her cancer treatment but preventative and follow-up care for other health issues.  It is stories such as this that I see as totally preventable when a person lives in a residential community with comprehensive care.  What budget does the cost of her care due to mismanagement of her health problems get attributed to?  This doesn’t even take into the account the effects of pain and suffering to this woman. 

 

I know from  looking at many sources which DDD and DSHS provide regarding costs of care, services requested and provided and even the cost of care for the 30 highest cost DDD residents  that you provided to me, the figures that have been used for cost comparison are extremely inaccurate with missing costs, cost shifting and data input errors.    Data that was used for these cost comparison reports was taken from reports with many inaccuracies – therefore, the data pulled is essentially useless if getting an accurate assessment of the cost was the goal.   

 

 

In addition to the issues of safety for our residents, we must also look at safety and training for the caregivers.  I will be looking into the L&I cost of “on the job injuries” to caregivers and charting from which type of facility the highest percentages originate from. 

 

Again, hearing that The Department has now adopted and supports a continuum of care, maybe we can really move forward with innovative systems which are cost effective to safely support our most vulnerable citizens. 

 

I will be following up this letter with data which supports the need for a continuum of care.  In addition to having accurate data, it is critical for some very prominent advocacy groups to realize that denying our citizens with the support needs which are available in the residential communities is not only denying these people their human and civil rights but will weaken the whole system by putting an undue financial burden on our state.  These actions which they advocate for will actually minimize the services to many who have less acute support needs.  The dollar can only be stretched so far without something giving.

 

 If one were to follow their example of “everyone needs to live in the community” I’m afraid that we will lose many of our beloved family members. 

 

Again, thank you for your follow-up letter and I will be communicating with the Task Force Members often once the committee has been decided.

A Father Speaks

Who are the experts with regards to disability advocacy?  I believe the experts are the people who are involved with, love and care for our most vulnerable citizens.  These people are the families and caregivers.  The experts are not the ideologues that sit in offices thinking up ways in which they think our citizens should live.

Here is a letter from one of our experts – a father:

The Olmstead Decision

I realize that our legislators are very busy trying to sort out the facts and many are probably not sleeping very much right now.  I certainly would not want to be in any of their shoes – but they are also not in my shoes nor have many of them lived the life of being a parent of a child with developmental disabilities.  Until you have lived it, it is very, very hard to even imagine what life would be like.  It’s easy to take a glimpse here and there and make assumptions but that cannot be generalized to what the total responsibility of caring for a family member with very intense care needs involves.

Senator Adam Kline is one such person who does not comprehend the intensity of care needs or the issues involved in supporting a continuum of care for our citizens with developmental disabilities.  Senator Kline references studies published by DSHS as reliable sources for cost comparison.  If one were to look at the original source, one would see how flawed these DSHS reports are.  Of course, that takes time and energy and our legislators need to rely on agencies to provide this information.  What do we, as citizens, do when these agencies themselves are part of the problem?

Yes, Senator Kline is correct in saying that this is not all about cost but that we need to address the issue of quality of life and the least restrictive environment.  To me, that is actually the main issue and it is for this reason that I fight so hard to maintain our continuum of care for our most profoundly affected citizens with disabilities.  Yes, there are many of our citizens with developmental disabilities that do much better in residential neighborhood communities – in fact, that is probably the best alternative for most of our citizens.  But, for some, that alternative is as if placing them in isolation, unable to interact with the outside world, at the mercy of a mostly untrained and inexperienced care staff and with little oversight to make sure that our citizens are being treated humanely.  This is the violation of human rights – not what Senator Adam Kline is talking about.

No one is disputing the issue that Senator Kline writes about with regards to “individuals ought not to be institutionalized when their needs for habilitation can be met in a less restrictive alternative.”  What he is really missing though is that for many, our state operated residential centers (RHCs) are the least restrictive alternative.  So it sounds to me as if Senator Kline is encouraging people disobey the US Supreme Court in the Olmstead decision by supporting moving our residents out of their community which is the least restrictive for them into a more restrictive community.

The Olmstead Decision

The Court based its ruling in Olmstead on sections of the ADA and federal regulations that require states to administer their services, programs and activities “in the most integrated setting appropriate to the needs of qualified individuals with disabilities.”

Under the Court’s ruling, certain principles have emerged:

  • unjustified institutionalization of people with disabilities is discrimination and violates the ADA;
  • states are required to provide community-based services for persons with disabilities otherwise entitled to institutional services when the state’s treatment professionals reasonably determine that community placement is appropriate; the person does not oppose such placement; and the placement can reasonably be accommodated, taking into account resources available to the state and the needs of others receiving state-supported disability services;
  • a person cannot be denied community services just to keep an institution at its full capacity; and,
  • there is no requirement under the ADA that community-based services be imposed on people with disabilities who do not desire it.
This is the part that Senator Kline needs to re-read.  He seems to be missing this information when citing the Olmstead Decision.
For more information and letters sent to our Washington State Legislators, they are in the links section.