Category Archives: Grassroots Advocacy

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.

 

Public funds used to discriminate – The Arc of King County

There has been a long-standing issue with regards to advocacy by The Arc of King County.  The Arc of King County has a contract with King County Department of Community and Human Services, Developmental Disabilities Division, which provides thousands of public dollars, both county and Washington State funds, to The Arc of King County to fulfill advocacy, outreach and support to people with developmental disabilities and their families.

The Arc of King County discriminates against people and their families who may need the full continuum of care support needs provided in our state operated residential habilitation centers.  These supportive communities provide an intense level of support in the most cost effective and safe way to some of our states most vulnerable citizens.  The Arc of King County does not support any form of congregate care and therefore uses their personal and corporate biases in violating the contract they hold with King County.  In essence, they are using our public funds to mislead and misinform people.

It is perfectly fine for The Arc of King County to not support congregate care but they need to be upfront and honest with that bias and allow others to share information and education regarding these supports.  Censorship is regularly used by The Arc of King County to prevent families from sharing information regarding the needs of people who may desire the community supports at the residential habilitation center.

The Arc of King County denies access to Facebook pages, Websites and public blogs to people who may support a full continuum of care.  This is violates the contract they hold with King County.

Please write to your King County Councilmember informing them of these violations and inappropriate use of our county funds.

The Arc of King County Contract with King County 2012

The Arc and King County Contract with highlighted boxes

The Arc of King County and Social Media

king county funds to The Arc of King County

 

 

 

Self Advocacy and The Arc of King County

“You do not have my permission to use my picture or any image from our publications, website, blogs or Facebook.

Sylvia Fuerstenburg (Executive Director, The Arc of King County)

given the above restrictions put on me by the Executive Director of The Arc of King County, I cannot put a link to her blog on my site.  The name of the blog is Sylvia’s Blog and there is an entry on March 4, 2013 regarding self-advocacy to which I have attempted to post a comment.  My comment is below but may not be posted to Sylvia’s Blog as it may stay under “awaiting moderation” so that it will not be visible to others who may read the blog.

Cheryl Felak on March 5, 2013 at 7:48 pm said:  This post was not approved and was removed from the website.  I have therefore attempted to post again  - see note below:

Your comment is awaiting moderation.

I fully support the work of self-advocates but I also have some serious questions regarding self advocacy for those who are not able to be their own advocate. I believe The Arc assumes that everyone can be their own self advocate if they have the training to do so – as evidenced by the quote ” Becoming a self-advocate simply means protecting one’s own self-interests — demanding re­spect, reaching out for the services and supports needed to fully participate, and simply making others aware of what it means to be a person with I/DD. When you empower yourself in this way, you can then empower others to join in the cause with you.’

My reality and the reality of many who I know and work with, being their own advocate is something that they cannot even comprehend. This is why they need others to advocate for them and why they need guardians to help protect them. Are you saying then that the people who advocate for those who are unable to be their own advocates are not needed? How does The Arc value the concerns and work of these advocates who advocate on behalf of our most vulnerable who are unable to be their own advocates?

When a person has no concept of personal safety, how to stay safe, what they may need to manage their own personal care, is unable to figure out out to get things they may need for food, shelter, personal safety, and without someone there to help them every day to maintain their health and safety, how does The Arc envision teaching these people to be their own advocate? What if these people cannot voice their concerns? What if these people do not know what they need?

I do not see these issues addressed in connection with self-advocacy and I would really appreciate knowing how The Arc and self-advocacy groups address these issues and how they view the advocates who work on these people’s behalf.

 

I fully support the work of self-advocates but I also have some serious questions regarding self advocacy for those who are not able to be their own advocate. I believe The Arc assumes that everyone can be their own self advocate if they have the training to do so – as evidenced by the quote ” Becoming a self-advocate simply means protecting one’s own self-interests — demanding re¬spect, reaching out for the services and supports needed to fully participate, and simply making others aware of what it means to be a person with I/DD. When you empower yourself in this way, you can then empower others to join in the cause with you.’
My reality and the reality of many whom I know and work with, being their own advocate is something that they cannot even comprehend. This is why they need others to advocate for them and why they need guardians to help protect them. Are you saying then that the people who advocate for those who are unable to be their own advocates are not needed? How does The Arc value the concerns and work of these advocates who advocate on behalf of our most vulnerable who are unable to be their own advocates?
When a person has no concept of personal safety, how to stay safe, what they may need to manage their own personal care, is unable to figure out how to get things they may need for food, shelter, personal safety, and without someone there to help them every day to maintain their health and safety, how does The Arc envision teaching these people to be their own advocate? What if these people cannot voice their concerns? What if these people do not know what they need?
I do not see these issues addressed in connection with self-advocacy and I would really appreciate knowing how The Arc and self-advocacy groups address these issues and how they view the advocates who work on these people’s behalf.
I’m also very curious how The Arc addresses the issues of the incompetent person as defined in Washington State Law and guardianship. By definition of one’s disability and functional abilities some people are not able to make safe choices and by court order are unable to make those choices. How does The Arc address these people with regards to being a self-advocate?
The court realizes that some people 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, legally incompetent. This makes them dependent on their parents/guardians to represent them. Why does The Arc seemingly discriminate against court appointed legal guardians to advocate on behalf of their ward?

 

Our Families need RESPITE

Many, many families can be helped with just a little bit of stable, reliable respite.  Please support HB 1546

There are options that need to be looked at so that families can receive respite – it is not enough to just add hours without finding a way to provide that respite to families. Families who are already eligible for respite hours do not have enough providers.  We need to look at ways to improve the system to make respite accessible and reliable for families.

When respite providers make little more than a babysitter (this may not be true – a teenage babysitter may make more than a respite provider who is providing care to adults and children with challenging special needs) it’s no wonder that families cannot find or keep a provider.

What happens is families stay home to provide care for their child.  Typically, when your child develops and grows, when they are teenagers you are able to leave them alone for awhile.  Not so with our families.  We need to be there when our child comes home on the bus.  We need to be there all afternoon and evening.  Jobs are lost, opportunities for siblings are lost.  It’s not just watching them – it’s making sure they are toileted, making sure they have something to eat, making sure they are safe, making sure they have their medications and more.  It’s being attentive and involved in their care and well-being, keeping them active and engaged, interested in activities and helping them along the way, giving needed supports.

Without respite our families are becoming socially excluded – isolated from community.  This is not what the inclusion movement was intended to do but it has become the reality for many families.

One mother testified very frankly to the DD Service System Task Force on October 23, 2012.    You can hear how grateful those who are able to have respite are and also the difficulties they face and will continue to face with our current system in place.

Please take a look at other options:  in-home or facility based are not the only options available.  Many more could access respite if DDD partnered with schools, community centers, city park and county park departments.  The Seattle Parks and Recreation Specialized program is the program that I am most familiar with.  This program has been the best respite for our son – not only providing stable, reliable care with experienced providers in working with the DD population but they have provided many group activities, experiences and outings that we would never have had the energy to do.

With this center-based or activity based respite  (although it was not paid for by respite hours – we paid for it) was the best option for not only our son but our family.   Specialized Programs also offers day camps and overnight camps every summer.  Every year we see staff members return to take part in these events.   It would be wonderful to develop more programs such as this to provide stable respite care with trained providers for our most vulnerable populations.

By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability,  have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care.

By sharing resources and pooling resource the resources will go much further and benefit many more by making these services accessible.

 

 

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

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

Seattle Times “Opinion”

I want to be hopeful but am afraid that nothing will change.  Even though The Seattle Times published an article by Maureen O’Hagan entitled ” State ignoring abuse at group homes “ and The Seattle Times published the editorial “DSHS must investigate alleged abuse at group homes for the disabled” my hopes of reform fade.  We hear that The Arc – Washington State will be advocating with legislators on this.  The Arc-Washington writes “The basis of the problem lies with DSHS. It takes weeks or months for them to respond to reports of abuse and often nothing happens. The Governor proposes to add funding for more investigators.”

This is just “talk” and will amount to “no action” from The Arc, Disability Rights Washington, Washington State Developmental Disabilities Council and other agencies which receive public funds to advocate for this population.  The history is that they use these funds to discriminate our most vulnerable.   In the name of deinstitutionalization these groups have advocated for community inclusion.  What these groups do not understand is that many of these same people already lived in a community – it may have been a different type of community than what the people who run these organizations may choose to live in,  but it is a community for the people who find it supportive, safe and stable.

The mis-placed and misguided advocacy of these groups is also the basis of this problem.  I know that I am not the only one who has attempted to educate these advocacy groups on the issues of unsafe conditions in these group homes or issues of safety and stability.  These groups have not wanted to hear or acknowledge that there were problems.  They wanted to see that moving people from stable and safe supportive communities to individual homes scattered far from their friends and families to be “included” in community was an experiment that was succeeding. They wanted to see “inclusion” and “integration” work.  I do too – the difference is that I see inclusion as being part of the community – community meaning participating, contributing and belonging.  I believe each person can define what that community is to them and they can make a choice.  The misguided advocates do not allow people to make this choice and have defined “community” to mean something else.  Many times the “community” these misguided advocates force upon people does not lead to “inclusion” but to  ISOLATION and IMPRISONMENT.

This experiment failed – many have been harmed or killed.  It’s time to stop this experiment on unsuspecting people. How many of these people provided “informed consent” to this social experiment?

Where is the advocacy for improved oversight, better staffing levels, better pay for caregivers?  These are critical to improving care, safety and stability for all.  Yes, we need investigations but investigations without action will do nothing except waste more money and cause more harm.