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

Who are Self-Advocates?

Recently there was a “Proclamation for the Dignity and Rights of All Human Beings” circulated by Allies in Advocacy and Spokane County Parent Coalition.

I have real concerns about documents such as this, supposedly written by self-advocates.  Self-advocacy is important and empowering but not when it assumes to speak for all.  There are so many people with developmental and intellectual disabilities who cannot speak for themselves and who would not agree with or be capable of much of what is written in this document.  I would like to know how self-advocates address the issues of those unable to speak, unable to reason, unable to process thoughts in a coherent manner.  With self-advocacy even more of our vulnerable  loved ones are forgotten.- assuming the self-advocacy groups speak for all people who have developmental disabilities.

In addressing these groups I would be so glad to hear how they incorporate the needs, desires and choices of those less able.  How do they address choice? How do they address those who leave the choices to their guardians?  Just because a guardian is making a decision does not mean that they did not listen or take into account the needs and choices of the individual.

Yes, risk taking and the opportunity to fail are important to learning – but as a healthcare professional and guardian, I do believe that there is a fine line between allowing one to fail and allowing one to harm oneself in the process of risk taking.  Some people, regardless if you think they are capable of making sound decisions, are not able to do this and do need to have a guardian make decisions for them.  This in no way takes away any of the human dignity of the person who needs this support – rather it honors their abilities and inherent dignity.

Just as self-advocates do not want people making decisions for them, as a guardian I do not want self-advocates making decisions for my son.  My son would not agree with many of the statements in the proclamation and would not understand 99% of what it even says.  In complaining about decisions being made for them and how they don’t like things, they make decisions and discriminate against those who are more vulnerable, those who cannot speak for themselves.  This seems a little hypocritical to me.

Self-advocates say they do not want to be labeled and do not want to be called special, do not want to be perceived as needing anything more than anyone else.  I’m curious though, in this line of thinking, without having adaptations and specialized equipment and supports, how would they be able to involved in the community as much as they are?  It can’t be both ways.  Many people with developmental and intellectual disabilities do need “special” treatments, equipment, supports and adaptations to participate in community life and to have a good quality of life.  Why would self-advocates deny this?  I am so grateful and appreciative of the special attention and supports my son receives.  These have enabled him to live a well-adjusted life and be happy.

Advocacy does not mean playing the victim and telling others that you deserve something.  Advocacy is not complaining about the good that others may receive.  Advocacy is not pitting one vulnerable group against another.  Advocacy is not placing blame on other populations.  Advocacy is not self-centered.

Advocacy is working in a collaborative efforts to make things better for all – looking at innovative and constructive systems and methods and being appreciative and thankful for supports.  I do not see this happening in the self-advocacy movement  – if it is, please let me know.

 

 

 

 

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.

Choice, Quality of Care and Quality of Life

Where does safety fit into choice and quality of life?  Safety is paramount and the ability to make choice without understanding safety may actually lower the quality of life.  Why is choice seen as one of the paramount indicators of quality of life and self-determination? 

 

 

Self-Determination and self-advocacy are words which we hear over and over again involving the policies and care of our citizens with developmental disabilities.  What many are forgetting is that one must have a certain level of cognitive development in order to make the choices which many see as the building blocks of self-determination. 

 

Studies have shown that those with more severe intellectual disabilities have lower levels of self-determination. (Nota, 2007) Choice opportunity is one measure that is frequently used in quality of life and self-determination values.  That leads me to a couple of huge questions.

 

Who decided what quality of life means and what choices are important for each individual?  The choices that are important to me may not be important to others and the ability to make a choice does not mean that my choice will be granted.  The same can be said for quality of life measures.  I would argue that for some, the offering of too many choices reduces their quality of life – think about how many T.V. stations there are to watch or phone plans to choose from.  In reality wouldn’t it be easier and improve quality of life to only have a few concrete choices rather than a so many choices that one can becomes paralyzed by the inability to make a choice?

 

When looking at the Quality Assurance assessments that the Division of Developmental Disability uses to assess it is clear that most of the questions can not be answered by self-reporting of those with more severe ID. (Comparison of QA Movers Client Data and NCI Client Data from Marcy 2007 to March 2009, 2009) There are times when self-reporting measures are not appropriate and using this assessment as a measure of QA for those who have moved out of the institution is one of these times.  DDD QA Movers 2007-2009

 

As you read the questions realize that the reliability of this assessment is dependent on the person understanding and answering the questions.  According to this report, 74% of the people could answer independently or with alternative pictures yet when the interviewer asked if the person appeared to understand most of the questions (yes responses 82%) and did the person seem to answer the questions in a consistent manner (yes response 87%)it is apparent that even that 74% was not able to fully understand the assessment.  This means that if there were 50 people included in this assessment, only 30-32 were really able to answer the questions and be included in this DDD Quality Assurance Tool. 

 

Self-reported answers by people with intellectual disabilities that impact their capacity to respond to abstract or cognitively complex questions are not reliable.  Many of these people may respond in an acquiescent manner or with incongruous answers.  Doubt has also been cast on the reliability of proxy responses, particularly in regards to questions about resident satisfaction in various aspects of their lives ( (Perry, 2003) It is also thought that the use of proxy indicators cannot be used at all for subjective well-being of the individual with intellectual disabilities  (R.A., 2002)  Given that the QA assessment the Washington State Division of Developmental Disabilities utilizes involves predominantly subjective questions which are too abstract for many with severe ID to understand, is the use of proxy reporting even a valid assessment?  I tend to think it is not.  Below are some questions on the DDD QA Movers Assessment and the answers:

 

1.        Do Staff help you where you live? No (0%) Sometimes (0%) Yes (100%)

 

2.       Are Staff nice to you?  No, most staff are not nice (0%) Some Staff are nice (6%) Yes, most staff are nice (94%)

 

3.       Is this provider available to provide regular services during the hours you need him/her? Yes (100%) Sometimes (0%) no (0%)

 

4.       Is this provider capable of handling your special care needs? Yes (100%) sometimes (0%) no (0%)

 

5.       Does this provider know what to do in case of an emergency while caring for you? Yes(96%) sometimes (0%) No (4%)

 

6.       Are you happy with your personal life, or do you feel unhappy? Unhappy (8%) in-between (27%) happy (65%)

 

7.       Are DDD staff who assist you with planning generally effective? Yes (100%) no (0%)

 

8.       Are you getting all the medications that a doctor or other health care professional said that

you   need?  No(0%) Sometimes (0%) yes (100%) no medications needed (0%)

 

Speaking from the perspective of a healthcare professional and also as a parent of a child with severe functional developmental disabilities the use of a tool that uses objective measures and criteria would be a much more useful and reliable tool.  The use of objective criteria as in the Personal care quality of life measure (Personal Life Quality Protocol ) would give much more useful data than any measure that uses self-reporting or proxy answers as used in the DDD QA Movers assessment.

 

This brings me back to choice.  Using choice as a measurement tool for self-determination and quality of life has many problems.  This goes back to who decided what choices are important for that person.  How can one measure one person’s quality of life from another person’s perspective?  Yes there are certain cases in which this can be done, mainly with objective criteria, but how is this done with subjective criteria?  Where is the issue of safety with regards to choice?  Many choices may not be safe choices and if one was given the opportunity to make choices without knowing the consequences or even have the ability to understand what a consequence is, how can making choices be seen as in improvement on the quality of life? 

 

 

From my own life experience I can see that our son has a high quality of life.  We see that he is happy.  It is very easy to tell with him when he is happy and when he is agitated. Since his move to Fircrest his quality of life as expressed by his decreased agitation, improved health (no hospitalizations) and his desire to return to Fircrest (his home) after a short visit at his family’s home or outing are all strong indicators that he would find satisfaction with his quality of life.  Yet there is no way that he could verbalize that to anyone or answer any assessment reliably to come up with that same assessment. 

 

 

 

Within a safe environment (again something that he could not manage by his independent choices) our son is able to make choices that are extremely important to him.  Also, many of these choices are not choices that were available to him in our family’s home due to the safety factor.  Our son now lives in a home without locks on every door, cupboard and window.  He can freely go in the kitchen and get himself a drink when he desires.  He can watch his TV and make the choice as to what he wants to watch when he wants to watch it and he can play his music when he chooses to. 

 

Choices on outings that are very important to him include which street to drive down, which neighborhood store to visit, which restaurant he wants to go to, if he wants to use “check out by myself” or go to a cashier and then which cashier, are all choices that he finds extremely important and are choices that he is allowed to make.  He is not allowed to make choices that would jeopardize his safety but I see the denial of those choices a factor which improves his quality of life. 

 

Safety is the paramount choice and without safety there is not quality of life.  This most critical choice has been made for our son which now enables him to have the freedom he needs to make his own choices. 

 

As an aside to this issue I have been researching citations to Adult Family Homes.  This link will take you to a chart which indicates the number of citations that have been written in 2009 and 2010 for AFH licensed to care for people with Developmental Disabilities.  12.6% of the home have had citations issues since April 15, 2010.  AFH Citation chart

 

Sample of written citations in Adult Family Homes that are licensed for DD care.  Citations related to care and abuse of residents from April 15, 2010 through December 2011

 

 

 

(2009). Comparison of QA Movers Client Data and NCI Client Data from Marcy 2007 to March 2009. Division of Developmental Disabilities.

Nota, L. L. (2007, November). Self-determination, social abilities and the quality of life of people with intellectual disability. Journal of Intellectual Disability Research, 51, pp. 850-865.

Perry, J. &. (2003). Quality of life outcomes for people with intellectual disabilities living in staffed community housing services: a stratified random sample of statutory, voluntary and private agency provision. Journal of Applied research in Intellectual Disabilities, pp. 1-18.

(n.d.). Personal Life Quality Protocol . The Center for Outcome Analysis. J.W. Conroy.

R.A., C. (2002). Proxy responding for subjective well-being: a review. International Review of Research in Mental Retardation, pp. 183-207.

Stancliffe, R. (1999). Proxy respondents and the quality of life questionnaire empowerment factor. Journal of Intellectual Disability Research, pp. 185-193.