Category Archives: Department of Developmental Disabilities (DDD)

Entitlement?

We hear over and over that the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) is an entitlement – but what does this mean in real life?

One would think that if something is an entitlement that it would be there for you when you needed those services   Not so with the ICF/ID and in the state of Washington, the ICF/ID is not available to you if you are 21 or under.

Recently I had a conversation with an executive director of an adult family home which is licensed for adults with developmental disabilities.  In talking about the experience that our family  went through in order to have our son admitted to the ICF/ID for lifesaving care,  this person was horrified.

She had heard that the ICF/ID was an entitlement and was very confused by our story.  She had no idea of the struggles and crises that most families and individuals have survived in order to be lucky enough to utilize this “entitlement.”  She then stated that she needed to hear these stories because she had believed that the ICF/ID was an entitlement not realizing that it is really far from that in real life stories.

Listen to the stories of families who are the survivors.  Of the many, many families that I have had contact with and of the stories I have heard, not one has had the ICF/ID offered to them as an entitlement.

In fact, after a long meeting with my son’s case-manager and the Children’s manager for the Division of Developmental Disabilities to discuss discharge planning from one of his many prolonged hospitalizations, I overheard the DDD manager say “Don’t offer them anything!” as I left the meeting.

What they did offer was for us to call 911 for his next crisis since the Regional Service Network Administrator had indicated that he would not approve another admission for our son since “he was not improving with treatment.” Doesn’t that mean that he needs more help and maybe ought to be able to take advantage of his “entitlement?” DDD didn’t think so.

Obviously with respect to the ICF/ID, the definition of “entitlement” is different and does not mean a guarantee of access to benefits based on established rights. It seems to mean fight until you are almost dead, endure abuse, be jailed, or many other horrible scenarios before you may be “entitled” to access appropriate care in the ICF/ID.

People need to know the stories of our survivors.  Please share yours.

 

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.

 

 

Recycling gone bad

Recycling is generally good but not in the case of politics and the Department of Social and Health Services in Washington State.

In 2010, Kathy Leitch, then Assistant Secretary of Aging and Disability Services Administration was demoted after an investigation sparked by the report “Seniors for Sale” as reported in The Seattle Times by Michael  J. Behrens.   The report brought forth issues of abuse in adult family homes.  Abuses have continued and were highlighted again in recent reports concerning vulnerable citizens with developmental disabilities.

Seniors for Sale – The Seattle Times Investigative Report by Michael J. Behrens

DSHS demotes State’s Adult Home Chief – The Seattle Times

Today, February 8, 2013, Kathy Leitch was appointed as the acting assistant secretary leading our state’s Developmental Disabilities Division.

In today’s press release, Department of Social and Health Services Secretary Kevin W. Quigley states ““Gov. Inslee has made it clear that we need to do more to meet our obligations to children and families in Washington,” Quigley said. “This realignment of leadership and accountability will help the Department meet its broad and complex responsibilities while following the governor’s direction that state government must operate more efficiently and produce measurable results.” (DSHS announces major leadership reorganization)

The press release heralds Ms. Leitch as a nationally recognized administrator with more than 30 years of experience. Her leadership has helped make Washington a national leader in the development of home- and community-based systems that meet the needs of vulnerable adults.

Is our state so poor in proactive, innovative and progressive leaders that we need to recycle people who have proven to be not only ineffective but dangerous?  Is this what we have to look forward to?

I find this appointment a slap in the fact to our vulnerable citizens.  Yet again, they are thrown under the bus and discarded.

We need to make our voices heard that this appointment is not in the best interest of our citizens with developmental disabilities or for our state.  I do hope that our newly elected Governor will realize this is a mistake and find a better solution to the problem.

Inclusion Delusion

Delusional thinking is taking over – what happened to logical thought processes and human dignity?  The National Council on Disability is  led by people who clearly do not understand the issues concerned with safely providing quality care to our most vulnerable citizens.  The policies the proscribe are not realistic and nor sustainable and will cause much harm to many.

 

Please read the most recent updates on this at The DD Newsblog.  The author there has written about this information very clearly and I recommend it for understanding of the situation.  My comments to the National Council will be forthcoming.

 

 

Washington State Discriminates against youth with DD

 

 

 

Our state has passed legislation into law which discriminates against our youth with developmental disabilities who have high

support needs – look at the facts – 42.3 % of the documented cases reviewed for RHC admission were of people 21 and under.

 

Developmental Disabilities Admissions Review Team Data from September 25, 2011 

admissions Review Report

 

 

11 of the 26 documented people who applied for RHC admission between September 2011 and September 2012 were age 21 or under.

 

That is 42.3% of the documented population.  This is clearly different than the story we hear from The Arc and DDD. 

Our young population is in need of these support services and our state is denying them these supports. 

 

 

(This does not include those who requested admission and were denied by their case manager.  This is the first step and if the person insists and specifically requests to have their person reviewed through the admissions review team, then it gets to this point.  We have no measures to know how many, in reality, are denied admission to the RHC and we do not know what the follow up of those people who were told “no” by the case manager is or what became of them.)

Below is an excerpt from a letter that I wrote to the DD Service System Task force on September 5, 2012.  I have outlined some of the issues regarding this discrimination.  The 18 year old in this letter is awaiting an appeals hearing with DDD.  They denied him admission but he is allowed to continue his short term stay until the appeal trial.  He is doing well with the needed supports at Fircrest.

Letter to Washington State Developmental Disabilities Service System Task Force

September 5, 2012

 

 

Age of Clients

I am greatly disturbed by SSB5459 which passed into State Law discrimination against our youth who may need the level of support services only provided in the RHCs.  I can find no mention of limiting support services by age in either the US DD Act or the 1999 US Supreme Court Decision Olmstead which would support such discrimination.

In regards to the Federal Home and Community Based Service Waivers, these are set up to allow for choice to not live in an institution and to promote community care.  The states may have choices to limit waivers to certain groups or populations but I do not see information from CMS which allows a state to deny those under 21 the supports services needed in the ICF/ID or that the ICF/ID has a federal age requirement for admission.  (See attached document regarding ICF/ID services) When there are no community alternatives for one under 21 who may need these support services and the person is denied long term admission to the RHC, where is this person supposed to go?  The issue is not if these services are available, they are – the issue is denying these services to those under 21 only due to the fact of this person’s age.

Former Secretary of the Department of Social and Health Services, Susan Dreyfus, responded to my question regarding this issue with “they still have a choice – they can send their child out of state.”  Why, when we have the appropriate services right here in our state would we choose to send our children to other states to receive the same service?

Below are some excerpts from the HCBS Waiver applications and contracts which refer to choice.  These individuals have been assessed to have the level of care support needs of the RHC but are not given the choice to utilize those services.

Currently, I am working with a family who has an 18 year old boy at Fircrest.  They family has requested that he receive long term placement at Fircrest given his intense support care needs and having no safe alternative in a community setting for him.  He had been on the CIIBS waiver until his recent short term admission for crisis care at Fircrest. The family has looked at over 8 community placements and with each setting there would be significant problems regarding safety for this individual. These issues range from close proximity to busy streets (this boy has a history of elopement and is very fast and strong) to high staffing turnover (up to rates of 49% in community residential homes) which would significantly put this young man at risk given the fact that he is non-verbal, aggressive, has PICA, does not sleep through the night and has to be moving constantly.

Since being on a short term stay at Fircrest, this boy has improved with his sleep patterns and behavior and has met the short term goals.  The reason he has met these goals is because he has the support staff that he needs to be successful at Fircrest.  This issue of support needs is often misunderstood.  This does not mean that now this boy is “cured” and he can return to his old environment and he will maintain the skills that he has accomplished at Fircrest.  This means that in order to be successful, he needs to have these supports in place.  Without these supports his life is at risk.

I would really like to emphasize this fact of support needs.  These individuals are not individuals who will learn a skill then go on their way.  These are individuals who will need to have these supports throughout their lives.  It is the level of supports which are stable and sustainable that enables these individuals to be successful and contributing members of our community.  Removing these supports puts their lives at risk.

Please take into consideration these issues when looking at the DD System of supports and the role of the RHC in that system.  I believe that the RHC is a critical part of the continuum of care service model which is a model that can best serve ALL citizens with developmental and intellectual disabilities.

Please see the link below for more information on this issue.

 

Washington State Discriminates against youth

 

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

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.

 

 

Deinstitutionalization – a National Disgrace

Did you know that if a person has a developmental or intellectual disability they can have all the other diseases, illnesses and conditions that everyone else has?  I know this seems like common sense but at times I do not think that the Division of Developmental Disabilities  (DDD) understands this.  When it comes to the dual diagnosis of Intellectual Disability/Developmental Disability (ID/DD), as a cost saving measure for the DD Silo, DDD is booting out clients with DD who happen to have a mental illness.  DDD states that the problems are caused by the mental illness and not DD!

There are problems with service delivery within the DD system but from what I read and see these problems are not nearly as bad as in the mental health system.  So, rather than caring for these extremely vulnerable citizens in at least one system, they are being sent to a system which is much worse, where they will surely die.  Where is the humanity in this?

Right now there is a gentleman who is fighting for services.  He is 30 years old and has a history of developmental disability, he has been served all his life through DD and had a HCBS waiver to move into a supported living arrangement.  We all know that transitions are difficult and this transition caused a crisis.  This man is currently in the state mental hospital in the wing for people with DD.

Can you believe that our state made him ineligible for DD services stating he has a mental illness?  This man had an assessment done in March 2012.  One week the family received a notice, based on this assessment, that he was eligible for the CORE Waiver and listed all the services he would be getting.  The next week DDD sent them a notice (based on the very same assessment which qualified him!) terminating all services.  Is this how our state treats those in crisis?  They take away the services?

This is just one example.  I am contacting many families and we will be putting together our own report on our experiences.  It will be shocking.

Guns and Mental Illness written by New York Times Op-Ed Columnist Joe Nocera, spells out some critical information.

“”Ultimately, the article I wrote was about how the “deinstitutionalization movement” of the 1960s and early 1970s — a movement prompted by the same liberal impulses that gave us civil rights and women’s rights — had become a national disgrace.”

and

“The state and federal rules around mental illness are built upon a delusion: that the sickest among us should always be in control of their own treatment, and that deinstitutionalization is the more humane route. That is not always the case.”

The risks of deinstitutionalization (in both the DD and the Mental Health systems) greatly outweigh the benefits – it’s time the program planners and policymakers realized this truth.