Category Archives: Health, Safety and Medical Issues

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!

It’s a beautiful day in the neighborhood!

 

Therapy Garden at Fircrest

 

 

Today was a wonderful day in the neighborhood.  I have been volunteering frequently in the community gardens at my son’s supported community.  As I spend more and more time on campus I see more and more how strong and supportive the community is.

Today I had 5 residents from 3 different houses helping fill the watering cans from the rain barrels that have been collecting rain water, planting peas, parsley, carrots, and watering the strawberry plants that we planted last week in the new strawberry field.  In addition to this we all sampled several varieties of the tasty greens that we are growing – the favorite is the Ruby Streaks Mustard Greens and the Tatsoi – an Asian green that is crisp and mild.

We then cleaned spruced up some gardens which have a huge dill plant and then weeded around the raspberry plants which are rejuvenating.  Next on the list was to water the blueberry grove which also has lots of onions and garlic growing around the perimeter.  It’s great that some of the residents have really taken on ownership of these gardens and the watering!

While I was there today I know that residents from two households were going to go to movies – different movies at different theaters and some others were going to go out for dinner.  Many were out walking and enjoying the weather and it always amazes me that everyone knows everyone else and they watch out for each other.

I also witnessed a support team call  - in this community there is always the opportunity at any moment for a crisis to erupt given the high intensity and support needs of most of the residents here.  When a support team call goes out there is extra staff that respond from various houses to the house in need to add extra support to manage whatever crisis has or is occurring.   When there is this type of support in a community it alleviates the need to call 911 for police to respond because the staff are familiar with the residents and are trained to manage the types of behaviors which typically cause a crisis.

It is shameful that many people, included those who call themselves advocates for people with developmental disabilities, push to close these supportive communities.  One reason they do this is because they are clueless as to the benefits of a supportive community for those who need this level of care.  They call these communities ”institutions” because they have not visited recently and have a pre-conceived ideas in their head that if these residents were dispersed, away from their friends and supports, they would be much better off!  They use incomplete information to say that the supportive communities are too expensive.

It’s such a shame that those who push to close these supportive communities refuse to visit and refuse to look at complete and accurate data regarding the cost, supports and services – comprehensive and cost effective and SAFE!

I do know that I enjoy spending time at my son’s community.  It truly is a “neighborhood” where everyone knows your name!

 

 

 

 

 

 

 

 

 

Let Your Voice Be Heard

The National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
NCD’s quarterly meetings are open to the public. People and organizations that represent the interests of people with disabilities are encouraged to attend these meetings, in person or by phone. The next NCD meeting is April 22 – 23, 2013 in Washington, D.C. The focus of this meeting will be NCD’s future “Policy Roadmap.” Families living in the D.C. area are encouraged to attend in person or you can join the meeting by phone (download the agenda, with location and phone details, here).

 

Next Phone & In-Person Public Comment Opportunities

April 22 – 23, 2013 during the NCD Quarterly Meeting

NCD will host two open public comment periods at its upcoming quarterly meeting on April 22-23, and we’d love for you to share your insights with us about emerging issues or other concerns on which you believe NCD should focus its attention.

For the two open public comment periods, statements will be received on any topic on a first-come, first-serve basis by phone and in-person. The first 30-minute open session is Monday April 22, from 4:45 P.M. until 5:15 P.M. ET and the second open session is Tuesday April 23, from 11:45 A.M. until 12:00, noon ET.

On Tuesday, April 23, NCD will hold an additional public comment period from 9:30 – 10:00 A.M. ET, reserved for in-person comments only regarding recommendations for NCD’s engagement on the UN Convention on the Rights of Persons with Disabilities (CRPD).

If you are interested in giving public comment, you will be asked to provide your name and organizational affiliation, if applicable, and to limit your comments to three minutes so we can hear from as many people as possible (for this reason, it’s advisable to write out what you intend to say).

NCD’s quarterly meeting is open to the public, and interested parties may join in-person or by phone in a listening-only capacity (with the exception of the public comment periods) using the following call-in number: 1-888-727-7630; passcode 5450168. If asked, the call host’s name is Stacey Brown or Jeff Rosen.

You may also provide public comment at any time by sending your comments in writing to Lawrence Carter-Long, Public Affairs Specialist, at LCarterLong@ncd.gov, using the subject line of “Public Comment.”

 

NCD April 2013 Meeting Agenda

 

Pilot Program Promising

Comprehensive, coordinated and cost-effective care – this is not impossible!

Children’s Comprehensive Care Clinic is a pilot program in Texas which is showing promise.  In Washington, we could expand on this by utilizing the campus communities at the Residential Habilitation Centers to become “Comprehensive Care Clinics” for our citizens with developmental disabilities.  The report, Medical Care Task Force Jan 2002,  outlines a process to establish comprehensive, coordinated and cost-effective care.

When looking at cost of care for residents in the supportive communities or dispersed communities, some of the major costs that are not included in the dispersed community costs are medical, psychological, and therapeutic costs.  Removing these costs from the cost analysis does not mean they are free – it means they are not available or accessible or not provided.  Of the many, many studies that have been done this issue of not including medical costs is a problem.  What is interesting though is that the studies that have been conducted in the UK are more accurate – different funding and different agendas.  The UK studies have consistently found that dispersed community services are more expensive than institutional services.

Another interesting issue is “quality of care” and “quality of life”.  The Arc and other DD Advocates do not look at issues that are outside the personal outcome measures, such as choice and community involvement.  They are missing a huge part of “quality of care” issues by their narrow focus and do not realize that “quality of care” influences “quality of life”.

Quality of care (health and safety outcomes) can be measured objectively where as “quality of life” is more subjective.  We meed to include measurements of quality of care into our assessments and cost analysis.  Below are some examples of areas needing evaluation.

a..  access to comprehensive health care services (primary, psychiatric and dental care as well as ancillary services, including care coordination)
b.  rates and status of abuse/neglect reports and investigations (including victimization in the community)
c.  mortality review
d.  access and utilization of behavioral services and
e.  similar direct measures.

When people who require complex care from a variety of professional services receive all their care in a “medical home” model, such as the ICF/ID, dispersing these people  will make access to healthcare, therapies, nursing, recreation and more unavailable. It is well documented that people with ID have higher rates of chronic medical and psychiatric illness than the general population.   It is also well documented that people with ID have an increased incidence of medical illnesses and have need for comprehensive, coordinated medical services. (Kaye McGivney, 2008)  For the best care it is critical to maintain the same providers over time and to avoid disruption of services. (Kaye McGivney, 2008) No longer will services be accessible or able to be shared.    This means that either the cost of care will greatly increase or that the person will not receive care.

Research also shows that those with DD, when admitted to the hospital, stay longer than those without a developmental disability.  People with DD are also less likely to be discharged to their pre-hospitalization living arrangement due to the fact that the needed supports were not accessible.  This fact highlights the importance of having specialized residential centers (ICF/IDs) to help alleviate the cost of care, crisis care and hospitalizations.  Having such centers increases stability is cost effective and provides stability to the citizens.  (Haier Saied, 2003)

Developmental Disabilities are not only experienced by the person but by the family.  We need to look at not only individual quality of life but the families’ experience and quality of life too. (Colvin, 2006) It is critical to the health and safety of our most vulnerable citizens and  a responsibility of our communities and government to realize that we need supportive communities such as the ICF/ID to best care for some of our citizens in the most cost effective, stable, reliable and safe method.

To do otherwise, is negligent.

Works Cited

Colvin, A. D. (2006). Variables Influencing Family Members’ Decisions Regarding Continued Placement of Family Members with Mental Disabilties in One State Operated Institution.

Haider Saeed, H. O.-J. (2003). Length of Stay for Psychiatric Inpatient Services: A Comparison of Admissions of People with and without Developmental Disabilities. The Journal of Behavioral Health Services & Research, 30(4), 406-417.

Kaye McGinty, R. W. (2008). Patient and Family Advocacy: Working with Individuals with Comorbid Mental Illness and Developmental Disabilities and their Families. Psychiatric Quarterly, 193-203.

 

National Council on Disability – Toolkit for Disaster

The message below was forwarded by an advocate for a continuum of care.  These are the contacts for those in Washington State –  People from every state should write their representatives to ensure that our most vulnerable are treated fairly and with human dignity – not negligence.

PLEASE ACT NOW!  Please use this email to send a letter to the National Council on Disability   PublicComment@ncd.gov

National Council on Disability (NCD) is a federally funded organization advising the Administration on Disability Issues.  NCD has   launched an all – out attack on facility care (institutions).  They propose the closure of all facilities over 3 beds.  They have even created a Toolkit for community advocates to follow in order to affect closures. They refer to deinstitutionalization as “unfinished business”. To the best of my knowledge, we have never had a representative of this organization visit any of our RHCs.  These are the people advising President Obama and Congress regarding the supports & services needed for the most vulnerable. If this group cannot represent both sides of the care question (institutions and community) they should not receive federal funding.

With the above in mind, please write, fax, telephone or e-mail the NCD regarding their position on congregate care.  Tell them our loved ones, living at the RHCs, are unable to receive the supports & services they need other than in our facilities.  The quality assurance within the community must be brought up to the same standards required by Centers for Medicare & Medicaid.  All of this takes planning, time and money.  All are in short supply at this time.

NCD, the President and Congress must be told not all individuals can successfully live in the community.  Many have tried and failed OR the community has failed them. VOR has contacted NCD and the White House with its concerns and objections.  Now it is our turn.

The contact information for the NCD is: National Council for Disability, 1331 F Street NW, Suite 850, Washington, DC 20004; Telephone: 202-272-2022; Fax: 202-272-2004; E-mail: website – http://www.ncd.gov.  At ncd.gov website you can click on their e-mail contact on the lower left hand side.

The President & Congress are best contacted through e-mail, fax or telephone. The White House contacts are: www.whitehouse.gov or 202-456-1111.  The mailing address for the White House is 1600 Pennsylvania Avenue NW, Washington, DC 20500.  Our Congressional Delegation can be reached as follows:

Sen Patty Murray                                 202-224-2621/F-202-224-0238

Sen Maria Cantwell                              202-224-3441/F-202-228-0514

Rep Suzan DelBene -1st                      202-225-6311/F-202-226-1606

Rep Rick Larsen-2nd                           202-225-2605/F-202-225-4420

Rep Jaime Herrera Buetler-3rd         202-225-3536/F-202-225-3478

Rep Cathy McMorris Rodgers-4th    202-225-2006/F-202-225-3392

Rep Doc Hastings -5th                         202-225-5816/F-202-225-3251

Rep Derek Kilmer-6th                         202-225-3251

Rep Jim McDermott-7th                     202-225-3106/F-202-225-6197

Rep Dave Reichert-8th                       202-225-7761/F-202-225-4282

Rep Adam Smith-9th                           202-225-8901/F-202-225-5893

Rep Denny Heck-10th                         202-225-9740/F-202-225-0129

Website addresses are also a link for contact.  Senators (last name.senate.gov); Representatives (lastname.house.gov)

Please send them your thoughts about the need for facility care as part of the continuum of care – the Safety Net – for our most vulnerable.

SAVE THIS PAGE FOR REFERENCE

Integrity – legislation passed based on false information

Our state saw some devastating legislation passed in 2011 in Senate Bill 5459:

  • One man died from negligence – there was laundry detergent stored in a milk carton, left on the counter and this man, who had been moved out of his home at Frances Haddon Morgan Center to a “community” home drank it and consequently died.  This man had a known disability of PICA (eating non-food items) but regardless of that, the fact that a non-food item had been stored in a food container is negligence – not accident.   I can only imagine the pain and suffering this man experienced in the few weeks between the time he drank this and when he eventually died.  He suffered immensely.  Yet does anyone care?  There were no charges filed.  If this had occurred in a day care center I can assure you there would have been charges filed but because this man had a developmental disability and the state was his guardian, there is no one person to watch out for him and advocate on his behalf.  
  • Our state has passed a law which discriminates against our youth with developmental disabilities.  Youth with high support needs who could be cared for safely and appropriately in one of our remaining residential habailitation centers are no longer able to access those services.  The only option left is crisis hospitalization or jail.  Is this progress?

What is also very disturbing is that this legislation was passed based on false information which was stated as “facts”.  These “facts” are not supported by the data from which they were drawn but the legislator who sponsored this bill chose to ignore any information that he found “uncomfortable”.  Others, when questioned about the supposed facts told me that they say no benefit in reviewing the questions I raised because the state did the research and  wondered why I would even question what the state provided.  This is they type of “leadership” we have.  This is frightening.

It’s time to pull their heads out of the sand, face the uncomfortable issues and address the questions.  Until this happens and there is a real dialogue, there will not be progress.

I have written to the Research and Data Analysis Division of the Department of Social and Health Services asking them to review the “research” report which was used extensively in this damaging legislation.  I have written to the Developmental Disabilities Service Task Force raising critical questions that need to be addressed.  I am hoping to engage in some real discussions which will tackle real issues and facts.

DD Task Force Committee wrap up

RDA integrity attachment

RDA Integrity attachment

FHMC Quality Assurance Report to Legislature

Incapacitated person

courtsb

My son has been found to be an incapacitated person according to law in the Superior court of the State of Washington.  This was recommended by a court appointed guardian ad litem.

By definition of his disability and his functional abilities, my son is not able to make safe choices and by court order is unable to make those choices.  He is unable to vote.

Why, when the court recognizes that my son, and many with similar issues, is incapacitated  are there “advocates” saying that he has the right to choose?  In my opinion they are telling me that my son is worthless and not important.  The are advocating for negligence.   They have no clue what his functional level is and their total disregard for his quality of life, his worth as a person are ignored.  My son and others deserve human dignity and respect just like everyone else.  He deserves safe, quality care.  He deserves the right to be free from harm.  The Superior Court has recognized this fact and the fact that he is unable to make these choices himself and to keep himself safe.   These are the choices that I make for him because he is unable to make those choices himself.  Certainly, those who have no idea what his experience is can make these decisions better than I can or better than those who know him can.

The court realized that my son and others are unable to make safe decisions and the court has taken steps to ensure there is a person who will make those decisions on behalf of those who are, by definition of their very disability, have a less developed capacity for abstract thinking and less developed level of verbal and linguistic capabilities.  This makes them dependent on their parents/guardians to represent them.(Anna Barelds, 2009)

To assume he is suddenly able to make choices which may affect his safety is negligence.

My goal is to keep my son safe and healthy.  My son has no clue about how to keep healthy and if he did he doses not have the functional ability to manage his basic safety.  Why are there people telling me and policy makers that people like my son are now miraculously able to make their own choices and to live independently?  My son and many others live in supportive communities – communities which are safe and offer stable, quality and sustainable care.

“It is the intent of the legislature to protect the liberty and autonomy of all people of this state and to enable them to exercise their rights under the law to the maximum extent, consistent with the capacity of each person. The legislature recognizes that people with incapacities have unique abilities and needs, and that some people with incapacities cannot exercise their rights or provide for their basic needs without the help of a guardian. However, their liberty and autonomy should be restricted through the guardianship process only to the minimum extent necessary to adequately provide for their own health or safety, or to adequately manage their financial affairs.” RCW 11.88.005. (Washington State Superior Court Guardianship Forms)

NOTICE OF LOSS OF VOTING RIGHTS
(Proposed SCOMIS Code: NTLVR)

“On _____________________, this matter came before the court. Pursuant to Laws of
Washington RCW 11.88.010, it has been determined that the individual named in this
notice lacks the capacity to understand the nature and effect of voting such that she or
he cannot make an individual choice and should not retain the right to vote.
Accordingly, the court has appointed a guardian and has revoked the right to vote.”

(Washington State Superior Court Guardianship Forms)

Anna Barelds, I. v. (2009). Quality of care and service trajectories for people with intellecftual disabilities: defining the aspects of quality from the client’s perspective. Scandinavian Journal of Caring Sciences, 24, 164-174.

“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.

 

Bibliography

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

 

 

Rhetoric and Hearsay are not Facts

One often hears the same “facts” over and over and then wonder why things do not improve or change.  The reason is because they are not the facts – only hearsay, wishful thinking and rhetoric.

People do not want the facts – as Senator Adam Kline states “when one is uncomfortable with the facts, one ignores them.”  This is often the case with Senator Kline when facts are provided to him.  Senator Kline is not the only one who ignores facts – there are other advocates who state they see no benefit in looking at the facts – the facts that do not agree with their wishful thinking.

Maybe the only way to get the facts to the public and the legislature is to encourage our Senators and Representatives to request Washington State Institute of Public Policy (WSIPP)  to research the issues.  The Institute’s mission is to carry out practical, non-partisan research—at legislative direction—on issues of importance to Washington State.

I have contacted WSIPP regarding the report

CHILDREN AND ADULTS WITH DEVELOPMENTAL DISABILITIES:
SERVICES IN WASHINGTON, RESEARCH EVIDENCE

with new information and issues concerning our citizens with developmental disabilities.  The lead author of that report wrote “

“You raise some very interesting points, particularly regarding cost-shifting and other impacts of services for individuals with developmental disabilities on the individuals’ families and communities. If we were to receive another research assignment in this area, we would use your suggestions to shape our work plan.”

The first thing I would ask is that WSIPP look at the report

Assessment Findings for Persons with Developmental Disabilities Served
in Residential Habilitation Centers
and Community Settings

which is regularly referred to regarding issues of support needs and acuity of people with DD.

That data clearly indicated that those in the RHC had significantly higher support needs overall than those who lived in the other two community settings.  Yet, the data did not support the hypothesis which DDD desired and therefore, the author chose to combine the two populations which were to be compared into one population.  The final conclusions and key findings only referred to two types of residences: 1. ) RHC and community residential settings and 2.) other community-based settings.  This manipulation of results greatly affected the interpretation of some excellent data and has been used inappropriately.

This chart has the actual data and the 3 populations depicted.  It is clear from this graph and also the report “An extremely large percentage of clients living in RHCs have high acuity levels (and therefore elevated or urgent need) for protective supervision (95.3 percent) and interpersonal support (86.3 percent), and almost three fourths have high acuity levels for activities of daily living (73.6 percent).” These are the areas which are the highest predictors of out-of-home placement needs.

interpersonal and protective supervisoin chart

“Clients in RHCs and community residential programs were more likely than those in other community-based settings to be categorized as “high acuity” based on their DDD acuity scale scores in terms of activities of daily living, interpersonal support and protective supervision needs. RHC clients were also more likely to have high acuity scores on medical, mobility and behavioral measures than those supported in the community”

real data for RDA

“Support needs are higher in most general life tasks, such as daily and community living activities, for DDD clients served in RHCs and community residential settings than for those supported in other community-based settings.” (italics by this author which indicate the combination of two populations which were to be compared)

manipulated data

One last graph to indicate the inaccurate information on costs – looking at this it makes sense why we have continued crisis and lack of care and services.

cost discrepancy

It’s time to take the big step and face those “uncomfortable” facts.  These are the facts that will help change things around and improve services.  It’s time for people to be informed!

For bibliography and references see the Legislative page of this blog

Alarming? Really?

 

 

Prevent abuse of people with developmental disabilities was the Op-Ed piece in The Seattle Times yesterday written by Sue Elliott, executive director of The Arc of Washington State and Ed Holen, executive director of Washington State Developmental Disabilities Council.  The issues brought forth are not new and I’m wondering why these agencies have not been continually advocating for safe and appropriate care, oversight and investigations all along?  It was clearly evident from the Op-Ed piece Supporting our most vulnerable citizens published in 1999 by these same two authors that these issues were of great concern.  What happened in the past 13 years between these two essays to improve the situation?  Apparently nothing – so what are these agencies advocating for and what is their purpose?

My belief is that these agencies have been led down a misguided path – rather than looking at the person who they are supposedly advocating for they have been advocating for those who gain financially from social experimentations of rapid deinstitutionalization without evidence based studies that this is the best option for some of our most vulnerable citizens.  There seems to be a rule that the data which DSHS and DDD share with these agencies is golden even though it may not make sense.  But because the data supports the agenda of these agencies which are backed by their supporters who will gain financially from this misguided advocacy,   it is used as fact and this is what our policy makers are given to use for legislative purposes.

In my attempts to ask these advocates and other decision makers in our state about the questionable conclusions I have been told may several of the executive directors of Arc chapters in our state that they do not question the information which DDD gives them, they do not ask questions about the sources, they assume the data is correct.

Recently, when I asked to meet with the statewide coordinator of the parent coalitions run by The Arc of King County,  he wrote he had seen my questions and data but did not want to address them.

All I can think is that these people just put their head in the sand and do not want to face reality.  They need to look at the questions asked and answer them, look at the glaring discrepancies and address them – they need to be accountable for their actions and inaction in their advocacy and not blame the legislature.  They are the ones giving the legislature the information and if they give the legislature garbage they will get garbage.

My concern is that many vulnerable people are being hurt by these who claim they care.