Tag Archives: DD Task Force

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

Are you afraid you are going to lose services? You already have!!

We have all lost a great deal of services and are at risk of loosing more.

If our state continues along the route it is going, with the human experiment of using our most vulnerable citizens as subjects who have not even consented to being involved,  by evicting them from their homes and moving them into more restrictive environments in a different community – we  ALL Lose.

This has been said to be a cost saving measure – it has now been proven and acknowledged that this will not save any money  but will in fact cost more.  How then, if this experiment is more costly than the services these folks have and are happy and satisfied with,  why then, are Senator Adam Kline and others continuing down this path?  Are they too proud to admit they may have made a mistake?  They say they care about our citizens, they say they are concerned about those without any services.  Their actions do not support what they say.

It is really time to eat that pride and stop this process before more people are hurt and more people lose services or go into crisis.   It’s not too late for most.

Unfortunately, it is too late for those 21 and under.  

Our state has taken away a life-saving choice for our children which some of you may need in the future.  Regardless of what is happening now with your child, there may come a time in your child’s life in which you may need to consider out of home placement for his/her safety and health.  This is not an easy choice to make at any time but sometimes it’s the best choice.

Right now there are several children 21 and under who have stabilized in the Residential Habilitation Center  (RHC)because they now have the support they require to stay safe.  These families have requested admission but our state is denying them admission to this life sustaining support system only for the fact that they are under 21.  There are no alternatives for these families and they now have to fight and hire lawyers so that their children may remain safe.  DSHS continues to deny admission.

Please, for the sake of all, write to your legislator, the DD Service System Task Force (address below) and ask them to repeal SSB5459 which prohibited those under 21 from accessing these services.  Also, write to tell them that you support a continuum of care which includes the RHC – regardless if you ever think that you will need it – because it is the safety net for all of us.

As a parent, being told that there is no place in our community which can care for your child and for you to call the police if there is a crisis is not something that any parent, particularly a parent of a young teen with a developmental disability, wants to hear – yet this is happening and has been happening because our state has taken away the freedom of choice as guaranteed in the US DD Act and the US Supreme Court Decision of Olmstead.

We need to preserve these choices so that all people can have a safe environment in which to live.  Even if this is not the choice that you would make, it is a choice that many families do make because they know it is the least restrictive environment for their child and a community in which their child can be safe, supported and participate in life to their fullest.

 

You can write to the DD Service System Task Force via Brittany Yunker – her email is Brittany.Yunker@leg.wa.gov

 

Or visit the Website for the Task Force at:

http://www.leg.wa.gov/JointCommittees/DDSSTF/Pages/default.aspx

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Human Subjects Research being done on our most vulnerable citizens with no consent or ethical review.

Senator Adam Kline is proposing legislation, again, which is an experiment on our most vulnerable citizens.  Why are we allowing this happen right under our noses and why aren’t more people calling him and others out on this unethical practice?

The year 2011 saw passage of a bill which legislated age discrimination in violation of the US DD Act and the US Supreme Court Decision Olmstead by not allowing those 21 and under to receive the life saving and life sustaining services in the Residential habilitation Center (RHC).  This bill also called for the closure of one of our state’s RHCs and froze admissions to another one.  There was one negligent death just one year ago of an individual who was evicted from his  RHC home into his “own” community home.  He suffered needlessly due to incompetent and untrained caregivers before dying from swallowing laundry detergent which had been stored on the counter in a milk carton.

Now, Senator Kline is again pushing our DD Service System Task force to run more experiments our most vulnerable.  He is advocating for closure of another RHC (he states 360 people – which is the number of people who reside at Rainier School) in the quote below transcribed from the Task Force meeting on October 9, 2012.

“You’ve got some number of families – of those 360,  would want to have their loved on in a RHC, receiving the kind of care that they have and their choice is in “hither or yon” or in the community.  The whole point of sub F (part of legislation that Senator Kline is trying to get passed)– take a look at it – is to guarantee as best we can – that the treatments – we spell it out – medical, nursing, dental, behavioral, mental, habilitation, employment, day support, that those, that the degree of applicability in the RHC is met in the community above and beyond what the residential provider provides.

So, the point is there may be some people, there will be some people for whom, a small number, for whom it will be more expensive to provide a vast needed bundle of services and supports in the community more expensive than it would be in the RHC.  I get that – for a small number of people and we’ll do it because for the much larger number of people, the same or better services can be provided at less cost and we can eat into that 13,000 waiting list.  Okay, there is an equity involved here, alright? “

October 9, 2012

Developmental Disabilities Service System Task Force

Olympia, WA

My questions:

Given that Senator Kline is clearly talking about closing an RHC and  he clearly states that community services will be more expensive.  Yet, Senator Kline has idea what the number will be of those whose care will be more expensive in the community than in their current RHC home.  This means that he will have to have a threshold of who will receive appropriate care and who will receive negligent care .

1.  How many people will Senator Kline allow to have their assessed needed services in the community?  10%, 25%, 50% 75%?

2. What is the cut off for not having ones assessed needs met?

3. What happens to those who then fall on the other side of that cut off?

4. Do we accept negligent care for them because their care is now too expensive?

Why would anyone consider moving people who are happy in their homes, not requesting to move and have their assessed services met in a cost effective system to an untested and most likely more expensive system?

Isn’t this illogical and unethical?  Well, this is exactly what Senator Adam Kline and others who are pushing for – an  expensive and experimental system change.  Where are the ethicists in this experiment?

Look at the  Code of  Federal Regulations  and ask about the protection of human subjects.  Why are our legislator allowed to play experiments on our loved ones without an ethical review team looking into this.

Is our state allowing clinical trials on our most vulnerable citizens without an ethical review?

Please look at the Nuremberg Code, the Helsinki Agreement and the Belmont Report (A Guide to Research Ethics, 2003) below and tell me why these experiments are even being talking about without going through an ethical review.

The Nuremberg Code has 10 guidelines:

1. Research participants must voluntarily consent to research participation

2. Research aims should contribute to the good of society

3. Research must be based on sound theory and prior animal testing

4. Research must avoid unnecessary physical and mental suffering

5. No research projects can go forward where serious injury and/or death are potential outcomes

6. The degree  of risk taken with research participants cannot exceed anticipated benefits of results

7. Proper environment and protection for participants is necessary

8. Experiments can be conducted only by scientifically qualified persons

9. Human subjects must be allowed to discontinue their participation at any time

10. Scientists must be prepared to terminate the experiment if there  is cause to believe that continuation will be harmful or result in injury or death

Helsinki Agreement

•  The necessity of using an independent investigator to review potential research projects

•  Employing a medically qualified person to supervise the research and assume responsibility for the health and welfare of human subjects

•  The importance of preserving the accuracy of research results

•  Suggestions on how to obtain informed consent from research participants

•  Rules concerning research with children and mentally incompetent persons

•  Evaluating and using experimental treatments on patients

•  The importance of determining which medical situations and conditions are  appropriate and safe for research

The Belmont Report outlines:

1. The ethical principles for research with human subjects

2. Boundaries between medical practice and research

3. The concepts of respect for persons, beneficence, and justice

4.  Applications of these principles in informed consent (respect for persons), assessing risks and benefits (beneficence), and subject selection (justice)

DD Service System Task Farce

So far I have learned that the task farce is not interested in facts – they refuse to look at real data or question the same recycled and inaccurate data which has been used over and over again for years - the very same data which has escalated the care crisis for our citizens with developmental disabilities.  Below are some of my observations:

  • There is no concern for escalating costs for programs which are new and untested which will serve less than 6 clients a year.
  • There is no awareness that the cost for high support needs clients in the community is much higher than the cost for a similar person in the Residential Habilitation Center (RHC).  Yes, we all know that there are many which very high support needs who live successfully in the community – but their costs are also high.  Lance Morehouse, Outreach and Advocacy Coordinator for King County Parent Coalition stated during one Task Farce meeting that his son lived at home for 17 years with the help of 19 hours a day of licensed nursing care without blinking an eye with regards to stating how he cares about all those without any services.   Am I missing something here?  How can one proudly state that they used that many service dollars (certainly much more than the daily cost for a client in the RHC) and then complain that the clients in the RHC (who gladly share services) are taking more than their fair share – doesn’t make sense to me.
  • There is no awareness that sharing services saves money
  • There is no awareness that people have a choice as to what the least restrictive environment for them is
  • There is no adherence to Olmstead with regards to choice, least restrictive environment or cost to the state.
  • It is not a concern that there is a huge lack of oversight in community residential settings
  • Even though our state has space and capability to provide services on the RHC campuses for those in community settings, the fact that it may take some” work to figure out an accounting system” seems daunting – yet on the other hand DDD has worked on building a program from the ground up with many unseen problems with a seemingly  limitless budget to service just a handful of clients.  This program will be experimental.  Is this a less costly and less labor intensive project than figuring out an accounting system?
  • Senator Adam Kline pushed his bill through the legislature based on inaccurate data and prematurely closed off services to our youth – yet he states he cares?   How can that be?

 

I realize that those in the driving seat will do whatever they want with little regard for facts or human lives at stake.  I find these actions negligent and inhumane.  Do they even care about the harm they are doing?

In order to change the name from DD Task Farce to DD Task Force, this group will have to look at accurate data.  I wonder if that will happen?

As many of you know we are in the midst of our DD Service System Task Force (or should I say Farce?)

19 hours a day

Lance Morehouse, Outreach and Advocacy Coordinator from The Arc of King County Parent Coalition for Developmental Disabilities, stated the following on September 25, 2012  as a member of the Developmental Disabilities Service System Task Force in Washington State. 

 

Lance (From The Arc of King County):”The comment about people who are more complicated or more profound being served by the RHC, I’d just like to ask Don really quick,  I think the data that I’ve seen has shown that the majority of the people ,Lance, Jr. had 19 hours a day of nursing care in our home and he lived in, it wasn’t an RHC but a children s  home in Spokane for the first year and a  half after he passed away and my experience was he almost passed away before we were able to bring him home but he lived another 17 years in our home with the nursing care, but isn’t there data that shows some of the people with the most intensive health care needs are living at home with their families?

Don (From DSHS):  ”That is accurate.”

 

My questions and comments are:

1.  No one has said that those with significant disabilities and high support needs cannot live in a community residential setting.  

2.  Did anyone hear what Lance said?  His son had 19 hours of licensed nursing care in their home for 17 years.  Has anyone wondered what our state paid for that care?  

3.  Lance is quick to point out that the care in the RHC is expensive and that there are many in the community with no services.  

4.  How can one talk about the personalized care in an individual’s home and stating that we need to have more people utilize this expensive care (when those same people are content to share services in the RHC at a lesser cost to our state) and then go on to talk about all those with no services and that the people in the RHC are taking more than “their fair share”  

5.  Are not these issues logically opposite?  

6.  What happened to the concept of sharing services for the better good of all?  This is exactly what those who choose to live in congregate care are doing.  They are saving money and resources by sharing with others.  Why is this so wrong?  

 

 

Respite Revamp

I have hope.  Hope that this DD Task Force will be able to accomplish something that the previous 38 or so before were not able to accomplish – namely revamp the system so that there are services for those in need before they get to the crisis state.

We need to think of new ideas that will serve our community members and stop blaming others for taking “more than their share.”  In order to do this though, we need to allow people to have their voices and concerns heard – even if they do not agree with our opinions.  We cannot shut out people who have something new or different to offer.  We need to stop the rhetoric.  I think we can do this.

As an advocate for a continuum of care, I do not advocate for one type of care over another but advocate that each person is seen as an individual and they are supported according to their needs.  That’s what I care about and in order to achieve that, we need a continuum of care services.

In thinking of innovative ways to better serve those in the community, I have come up with the “Respite Revamp” model.  I have introduced this previously but have just written to the DD Task Force today with the explanation of why a respite system like this will work better than the current system.  I believe that if more people had stable, reliable and sustainable respite, we would not see as much crisis oriented care.

Below is my letter to the DD Task Force  - I hope that this idea is considered.

September 8, 2012

Dear DD Task Force,

As a parent who has survived crisis I would like to give you an idea of a program which I believe would be greatly beneficial to those in the community.  This type of program would help families and alleviate some of the crisis situations by providing a service in a new way.  I refer to this as “Respite Revamp” and I believe that it will not only serve families better but would be a more cost effective system for DDD with respite service.

The problem is lack of availability and lack of consistency with in-home respite providers.  Our family and many others who utilized these services (may include Medicaid Personal Care providers too) have experienced similar problems. Many times the provider did not show up when scheduled, would show up but be physically or emotionally unable to do the job, not available on a consistent time or schedule and basically not reliable.

I will describe our situation but our situation is not unique.  Our family was lucky in that I was able to work part time as a registered nurse in the evening shift and my husband, who is a professor, was able to be flexible enough with his schedule so that there was always one of us available to care for our son.  This worked great until our son started Middle School and he got home from school before my husband could get home from work.  This is when we started to have many problems with the caregiver – be it Medicaid personal care or respite – they were the same people in our minds.

Given the low pay of these providers many have two jobs.  Many of these caregivers also work in the school districts.  This issue was a huge problem for us since the time we needed care was right after school and few caregivers were available.  This necessitated me even decreasing my work hours more so that our son could be cared for.

Caregivers calling in sick or late at the last minute caused more problems that I can think about.  We would schedule our lives around the times that we had a caregiver.  This meant doctor’s appointments, events with our other children and work.  When a caregiver did not show up it would cause havoc in our lives.   Not only would our son be traumatized by this which necessitated us working through his behavior issues due to change of schedules but caused many problems with the hospital where I worked (hospitals – particularly critical care areas with specialty nurses such as the unit I worked on– do not appreciate last minute calls from staff saying they cannot work that shift), last minute cancellations of important appointments and missed opportunities for us to participate in events of our other children.

This was not only a problem with independent providers but with agencies too.  When working with an agency which was supposed to ensure our son had consistency in caregivers, they would only schedule one week at a time (how does one then plan other appointments when they could not schedule more than a week out) and then they started sending caregivers who had not been oriented to our son without giving us prior notice.  When this occurred, there was no way that I could leave to go to work or the appointment that I needed to attend since it would not be safe to leave them here.

The most reliable and best service that was the most beneficial to us were programs that Seattle Parks and Recreation Specialized programs held.  These were programs were reliable, planned and the staff was consistent.  With group settings and programs that had staff backup, the stable, sustainable respite we received was lifesaving.  What was even better though was that our son was able to attend many community events which we could have never taken him too.  With this program we could plan events with our other children and know that Thomas would be cared for safely.  I cannot speak highly enough of this program – both the Saturday Activities Program and the Day Camp Program.

It is from thinking about this program that I believe the “Respite Revamp” may work.  If DDD could run some consistent day or evening programs in community centers rather than rely only on independent caregivers in homes, many more could benefit from this type of respite.

If there was group respite, the providers could be paid higher wages which hopefully would also help with stable, sustainable staff and consistency.  There would be staff back up so one person calling in sick would not cause the respite to be cancelled.  Families could plan around this time and feel it would be reliable.  This may be just enough to alleviate many crisis situations.

I truly believe that if a program such as this had been in place when my son was in Middle School and High School, our lives would have not been crisis driven, our son would still be at home and I would not have a permanent disability.  It’s too late for our family but it’s not too late for others who could greatly benefit from a program such as this.

Please consider programs such as this in thinking about systems to maximize the services we have and to reach those without services.  This would be a very cost effective and beneficial service.

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Respite Revamp

DD Task Force – Updates and Concerns

The Developmental Disabilities Task Force met and had a very informative meeting.  It appears there is a consensus supporting a continuum of care and a consensus that we are all concerned with those who do not have access to any paid services.  I want to thank the participants for their willingness to look thoroughly at these issues and issues and willingness to think of innovative approaches to the problem.

Link to audio of meeting  The slides and written information may not be up on the DD Task Force Website for a week or so.

Below is my letter to the task force regarding the presentations and comments:

September 7, 2012

Dear Task Force Members,

Thank you for the very informative discussion from the September 6, 2012 meeting. I have listened to it and look forward to seeing the slides that were presented once they are posted on the website. I do have some comments to make regarding the presentation and public testimonies which were heard.

 

Regarding 1:1 care

 

There is a huge difference between 24 hour 1:1 care in the RHC and in the community. Mark Eliason used this number in comparing acuities but what needs to be considered is that there are many in the RHC who do not need 1:1 due to the fact of living in an RHC. They do not need 1:1 in the RHC because there is available staff to keep them within eye sight or to respond to needs.

 
This would not be the case if this very same client with the very same support needs lived in a community setting. My son is one of these very people. While he was living at home we had to have a lock on his bedroom door to keep him safe. We were reported to and investigated by CPS for this. The response from DDD was that we would need to install an alarm system on his bedroom door. All an alarm would do would keep waking us up every time he left the room to wander the house or neighborhood or destroy things. An alarm would only add more crises to a situation which was well controlled by the lock we used.

 
I know that many, many families use methods such as this to keep their children safe but are afraid to say anything for fear of CPS taking their child away. I can tell you that my husband and I had many conversations regarding telling people what we had to do in our home to keep our son safe. My belief is that people need to know and I never had a problem telling people because I knew that the way in which we used the lock was for safety only. Our son never even used his room or went in there except to sleep – he much preferred to interact with people. This was never punitive or restrictive for him but a safety feature which allowed our family to sleep and allowed him to stay in a safe place for the night and sleep when he would sleep.

 
The CPS charges were “unfounded” and the issue they were most concerned about was if Thomas could get out of the house if there was a fire. I explained that if there was a fire and every door of the house was open, Thomas would still need help getting out of the house. In fact, this lock ensured that we would know where he was and could actually save time by going were we knew he would be and getting him to safety.

 
I think a much better way to look at comparing costs, and this was also suggested to me by Don Clintsman in correspondence which we had, is to look at the direct/indirect care costs. These figures are available and I have already sent in data which reflects these costs. Please ask Don Clintsman or Mark Eliason to gather the data on the most costly community clients and you will see the high cost of these clients in the community. When they retrieve this data though, it is important to remember that this is only the DDD cost and not a comprehensive cost which you will see with regards to the daily cost of a resident in the RHC.

 

 

Denial of Admission to RHC by the Admissions Review Team

 

Don Clintsman presented information on this and I believe he stated that there were only 2 people who were denied and these may have been cases in which other residents would have been at risk.
As a parent of a child who was denied services and as an advocate for others, I must agree with Julianne Moore’s testimony. I, too, have witnessed and know of many instances in which the families were denied services by the case manager or regional director. In these instances the process never even got to the Admission Review Team because a Request for Admission was never done. The denial for admission was done long before a request would have reached the team and the team does not even know about these many, many families.

 

I can also say that in our son’s case and with a family who I am working with at this time, both of our sons were already in the RHC prior to the Request for Admission was ever sent to the Admissions Review Team.
Julianne is very correct in her testimony and one cannot look at the Admissions Review Team data for accurate information regarding how many people are denied these services and how many families’ choices and requests for services were not considered.

 

Crisis Care

 

While the concept of the crisis team is good, why not use the facilities and services we already have in place to run this program out of? We have the space and expertise to do this already and it seems ridiculous to start a whole new program for something that we have which already works very well.

 
I believe this was also part of Julianne’s testimony and she is 100% correct in her assessments of the situation.

 
As a parent who has survived crisis after crisis, I can also tell you that you should look to the hospital emergency room data on how many people are taken there for crisis. I believe you will find a lot more information regarding where folks with developmental disabilities go when they have a crisis. I also know this is the case from working with other families and hearing their stories. Talk to the ER nurses at Seattle Children’s and ask them how many families bring their kids with DD (particularly autism) there for crisis intervention. Talk to the Inpatient Psychiatric Unit doctors, nurses, and staff and Seattle Children’s. I believe you will find staggering numbers. You will see a much different picture than one you may hear from DDD. DDD is not aware of many of these crisis admissions to the hospitals because they are not notified.

 
What about connecting the crisis care team with the local hospitals and emergency medical response systems? What about connecting with the Crisis Line? I know that not only in our family’s case but in many, many others, these are the systems which we accessed in times of crisis. These are the places in which we will be able to realize the extent of the crisis situation with people with DD.

 

 

Statewide Crisis Care Team

 

Again, while this seems like a great concept, as a parent I do not understand how this would work. When a team is sent to a home, where will the team stay while the child is being stabilized? Are hotel costs and travel costs all added in with the operational costs of this program?

 
Why, when we already have two facilities in Eastern Washington which have experts at working with DD clients in crisis, would a family opt to send their child across the mountains to Lakewood for care? This is not only an issue for those on the east side of the mountains but also on the west side. Doesn’t this only add to the crisis? Where is the family going to stay to be close to their child? Families are already at financial breaking points and the cost of travel and lodging could just add to the crisis – not to mention loss of employment and other issues that may come into this scenario such as child care for other children.

 
Crisis care needs to be in one’s community – we need to utilize the services we have and enhance them rather than reinventing the wheel with a program which is untested and unknown.

 

Choice of care and community

 

I hear over and over again that people have more choice in community settings – what they want to eat, who their roommates are, where they want to go and where they want to work as if those in the RHC do not have these choices.

 
Those in residential settings run by vendors and the state do not have choices of roommates. When looking at community residential homes, families are only given choices of homes in which there are vacancies. I have heard (please correct me if I’m wrong about this) but that the department cannot certify more homes or beds in the community until the vacancies in the current homes are filled.

 
If this is true and the current vacancies do not meet the needs of people needing residential services, how will their needs be met?

 

 
Emily Roberts testimony was wonderful and she gives a very different picture of people with developmental disabilities than the people who currently reside in the RHCs. Emily is very articulate and capable. She and others in SAIL are people who can be self advocates and I applaud them for that. They, though, do not speak for people like my son and many others who cannot make their voices heard. Emily talks about people who are able to work and go out in the community independently and she and others are great examples of why we need a continuum of care service model.

 

Waiver and allowable services

 

Don Clintsman reviewed the waiver services and referred to allowable services under each waiver. It also needs to be noted that there is a huge difference between “allowable” and “approved.” What is missing is that for the “allowable” services to be provided, they must be “approved” by a team. They also must be delivered by a contracted provider. These two conditions make these “allowable” services unattainable for many who may need them.
Trying to have the “allowable” services provided for our son was one of the issues which added to the crisis. Even with prescriptions from medical doctors and physical therapists, DDD would deny these services and say they were not necessary. With one thing in particular, the DDD Children’s manager told us to restrict fluids for our son so he would not need a specialty diaper – fluid restriction was not the problem – his neurology was the problem and he needed these specialty diapers. So, even though they were an “allowed” service, they were not “approved” and we therefore needed to purchase them ourselves. This is just one example but I have many which I could give.

 

Those without Services

 

I think it was made perfectly clear that we are all concerned about those not on a paid service. It is also clear there is a consensus that we do need a continuum of care to best meet the needs of ALL people with developmental disabilities. We also need to support the families in caring for their loved ones. They are the backbone of support and when we run them into the ground we not only send the person with DD into crisis but destroy the family.
I, too, am the face of crisis and survival, as Diane Larsen testified to you. It’s amazing what families will endure to take care of their loved one at home. The self-sacrifice is incredible and we need to support these families to enable them to care for their loved ones.
Moving our son to the RHC was not our first choice but it was the choice we had to make to keep him safe and healthy. It was the choice we had to make to save my life. It was the choice we had to make to enable our other children to heal. It was the choice we had to make to have our family together. It was the choice we had to make which would provide our son with the supports he needs to be a productive and contributing member of our community.
I miss our son. I still cry over this choice knowing that I, as his mother, am not able to care for him as I had planned. But that’s about me.

 

When I see him excited to return home to Fircrest after a “home visit”, when I see him jumping up and down with joy at Fircrest because he’s home and has to run around telling all the staff that is there “hi” without caring about telling me “bye”, when I hear a housemate of his say “Tommy’s home. Tommy is a happy boy”, when he can go into the kitchen and get a drink independently, when he can ask for a snack and his staff tells me it’s his new favorite thing, when staff tell me things that Thomas loves to do or what he has accomplished, when I walk around campus and he says “hi” to everyone he sees and calls them all by name and they return with “Hi Thomas”, I have to remember, this is about him. He is safe, healthy, and happy in his community.

Thank you,

Cheryl Felak, RN, BSN
Seattle, WA

Senator Adam Kline and Developmental Disabilities

Senator Adam Kline sponsored a devastating bill in Washington State.  This bill, SSB 5459, essentially closes off services to those under 16 and greatly limits services to the age group of 16-21.  In doing so, there are no replacement services for these youth and their families which support them.  This was done to save money(it won’t) and promote community networks (it won’t).  How can our public be so fooled by the misleading and false information which was used to get this bill passed?

I am so concerned about our community with Intellectual Disabilities and their families.  I’m particularly concerned about our families with younger kids coming into adolescence.  Where are they going to turn for help?  Who will be there in times of crisis?

The Developmental Disabilities Services Task Force was formed with the passage of SSB 5459.  This task force has met once in October 2011.  This task force was to have a report prepared for our legislature by December 2012.  How is this going to be done when there have been not meetings or assignments or communication?

I wrote the following letter to Senator Adam Kline and the members of the Task Force today.  I had written several times recently inquiring about future meetings but never received a response.  I do hope to receive a response to the following letter, if not from Senator Kline, then from someone who may know what is happening with the Task Force.

Dear Senator Kline,

I am writing this letter to you and others on the eve of my meeting with Gubernatorial Candidate Jay Inslee.  I have written to you several times in the past couple of years on these very issues but have never received an answer from you which indicated that you read the research or data I presented.

The Developmental Disabilities Task Force, which was formed out of the bill you sponsored, is due to have a report out by December 2012.  This task force has had one meeting at which essentially no work or plans were completed.  I have written to you, the co-chairs and Brittany Yunker, Senate Committee Assistant, for information regarding future plans.  I have not received an answer.  Given that this task force has an agenda to complete and report on (http://www.leg.wa.gov/JointCommittees/DDSSTF/Documents/Oct2011/5459Overview.pdf)  I’m curious when and how this work is going to be done.

In reviewing my information regarding the care of our citizens with Intellectual Disabilities, I have come across some very disturbing correspondence between you and others.  You have written to me about credibility and division and your writing exemplifies these problems and exacerbates the false and misleading “research” which is presented in order to push the agenda of consolidation and closure of the RHCs.

I believe in a continuum of care which upholds both the US DD Act and the 1999 US Supreme Court Decision Olmstead. I understand from your quote from a letter you wrote May 9, 2011 “And again, this whole conversation is only about the costs, leaving entirely un-addressed the notion that individuals ought not to be institutionalized when their needs for habilitation can be met in a less restrictive alternative.   (This is not merely my notion; it’s the constitutional right to due process decided by the US Supreme Court in the Olmstead case three or four years ago, and enforceable by the federal courts in the event the Justice Department should decide to proceed.  But let’s leave that aside and just talk numbers for now.)” that you may need to re-read Olmstead to understand what the decision is actually saying.

It appears to me that you are missing the point that for most of those who live in the RHC, the RHC is the LEAST RESTRICTIVE ENVIRONMENT for them. Olmstead supports the individual/family/guardian and professional’s choice and opinion on deciding what is the most appropriate environment for that person. Nowhere in Olmstead does it state that people should be deinstitutionalized just for the sake of deinstitutionalization.  On the other side, I have not heard any advocate state that people should be institutionalized against their choice either.  I do believe that we all support that in our advocacy.

One of your many criticisms of me is that I do not give resources and citations ( a criticism which I believe is unfounded – if you read any of my research or letters you would see all the citations given) yet you write “The question is whether those higher-acuity individuals remaining in state institutions can thrive in private community placements.  The consensus of parents and professionals is that they can.  There is certainly space for them.”  I’m curious what parents and professionals made up the consensus of this opinion?  Certainly none that chose to have their family member live in the RHC.  Where is the data which supports your statement?

You also write “It is up to us legislators to endorse policies that encourage parents and care-givers to voluntarily choose the community because it’s more productive. This means also that we need to move some percentage of funds from the institutions to the community, as we consolidate the institutions by closing two of them.”  I can tell you as a parent of one of these young folk who need the RHC to survive, I find anyone who would try to coerce me to “voluntarily” make a decision to move my child to a home which would not only be inadequate to serve his needs but be unsafe, as a person who endorses negligence.  Is this the type of advocacy that you believe a person should choose?  Would you choose negligence for your child?

I see over and over again in your letters the phrase “pro-community” and your plea to DD advocates who are “pro-community” to have them write letters to other legislators as in this statement you wrote  “many pro-community folks know they need to explain to all the legislators from Mars that they need an expansion of the community network, which can’t happen while all the money is being sucked up by the RHCs.”  Is this how SB5459 was passed?

I know this letter is a difficult one but these are difficult times.  It is time for you and other to answer the hard questions and to look at data from a different angle.  Times are changing and there is a whole group of young people out there and young families who will not have any services because of the misinformation which has been allowed to take over and control everything.  It is time to listen to those of us who are the experts – those who have young children with intensely high support needs, those of us who’s families have disintegrated from the never ending crisis – both emotional, medical and financial, and those of us who have survived.  The ones who have survived and are here to tell of the survival are the ones who were lucky enough to be allowed to  be admitted to the RHC.

As always, I welcome your comments and questions.  I will gladly answer them and point you to every citation and original source from which I draw my data.  You may also visit my blog at www.becausewecare1.com for many of this same information.

I will be sharing this letter with people in hopes of educating our community to the issues from a more open and honest perspective.  I have also attached a letter which Lance Morehouse wrote to legislators in response to your plea for letters and also my response to Lance.  These letters show differing perspectives from parents with children with high support needs.

 

There is a way to serve all and that is with a continuum of care. 

 

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

Lance Morehouse letter to legislators supporting consolidation

 

Cheryl Felak response to Lance Morehouse letter to legislators