Tag Archives: Crisis Care

Sylvia’s comments and thoughts shared

Sylvia Fuerstenburg, Executive Director of The Arc of King County, has again written an essay regarding the advocacy of The Arc for people against the right to live in supportive communities.   I just cannot wrap my brain around how an advocacy group, which receives thousands of dollars of public funds each year, is allowed to openly discriminate against a segment of the population which they are PAID to advocate for.  They clearly do not understand the situations of those who have homes in supportive communities and do not seem to realize that moving many of these people from their chosen communities and homes will only increase the crisis to the community as a whole.

Below is my letter to Ms. Fuerstenburg and Mr. Lance Morehouse, the Outreach and Advocacy Coordinator for King County Parent Coalition:  Please send your comments also.  I do not think that my comment will be published given past history of The Arc blocking critical information for families regarding supportive communities. but I keep trying to get through.

Dear Sylvia and Lance,

I would appreciate the opportunity to make a comment regarding your letter in the December Newsletter.  I do hope that my comments will be available for all to read and discuss.

I wholly support the mission of The Arc to advocate for people to live in the community of their choosing.  “The Arc believes that all people, regardless of the severity of their disability, can live successfully in the community with individualized and appropriate supports.”  I think that all advocates believe this – the problem is finding funding and maintaining a stable, qualified support staff as caregivers for those who need supports.

Do you listen to the people in the community talk about the difficulty they have in finding even someone to provide a couple of hours of respite?  Do you read about the very high staffing turnover of caregivers in community homes (up to 45% in some areas).  Do you listen to families of people living in family homes about how many caregivers they interview and hire each year to help with caregiving in the home?   Do you hear the parents who cannot work or who have lost their job because they have used too much “sick” time because they cannot get another caregiver?  Do you hear the families who are bankrupt or struggling financially because they cannot get help caring for their child?  Do you hear the families who use the ER or have to have their child admitted to the hospital for crisis care – the only “respite” those families receive?

It does not appear that The Arc hears these voices – if you did, it would be negligent to increase capacity of this residential population, particularly of those who need high supports, which would then over-tax an already under-funded and under-staffed community residential service system.

I have never heard that one is “too disabled to live in the community” from a person who advocates for a continuum of care, including living in a supportive community.  You’re right, no one is “too disabled” but there are people who do require a team of support people to keep them safe and healthy.  Sure, with unlimited funds, everyone could live in a residential neighborhood – but that is not the reality.  Our funds are limited.

As Lance said in the October 23, 2012 DD Task Force meeting, his son was able to live at home for 17 years with the help of 19 hours a day of licensed nursing care.   I’m very happy that their family had this opportunity but this is not a cost effective system to manage a large number of people who may need this level of nursing and caretaking support.  If all those in the supportive communities chose to live in a neighborhood residential home and required this high level of support to survive, would our state be able to financially handle that?  I know it wouldn’t.  So why then, does The Arc advocate for this type of residential service (which is clearly more expensive than a supportive community) and then say that those in the supportive community are taking more than their share?

It should really be the opposite – our state should be thanking those who choose to share services, and thanking those who choose to live in a supportive community home for many reasons.  These communities have a track record of having a more stable workforce and the fact that many services can be shared among residents is much more cost effective system for those with high support needs.

These supportive communities are far from segregated – in fact, most of the residents who have homes in these communities are out shopping, going to school, participating in parks events, go to church, attend neighborhood and city functions and more.  You just may not be aware of them because they have the support that they need to be out and about – unlike people locked away in their “community residential” home because a caregiver did not show up for work or the staff is untrained in behavior management and therefore unable to take the resident out of the house, or some other reason.

Living in a supportive community allows one more freedom.  Many of our citizens of all ages and types voluntarily choose to live in some sort of supportive community for various reasons.  Why are our citizens with ID/D being denied this right to choose which community is best for them?  Isn’t this discrimination against them due to their disability?  Isn’t the Arc against that type of discrimination?  Apparently not since The Arc advocates, and uses public funds, to do just that – discriminate against our most vulnerable.

It’s time for a change – let people have the choice – true choice – give them the information, allow them to decide what is best for them.

Thank you,

Cheryl Felak, RN, BSN

Photo and link from

December 2012 Newsletter

 http://hosted.verticalresponse.com/437417/c96b185e8e/1461566135/cdb5bffe12/

The Arc o f King County receives publlic funds from King County and Washington State to share information and advocate for individuals with DD

The Arc o f King County receives public funds from King County and Washington State to share information and advocate for individuals with DD

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

No Paid Caseload

The Washington State Developmental Disabilities Council  (DDC)  undertook the task of sending a survey out to those in our state who do not  receive any paid services through the Division of Developmental Disabilities.   Click Here to View Report “A Troubling Tale”
This is indeed a very troubling tale.  I fully understand the  issues from a first-hand experience and know crises that many of these families  are feeling.  I hope that people read this report and understand the  implications. 
With other reports coming out regarding the need for respite  care (http://www.disabilityscoop.com/2012/01/05/respite-more-beneficial/14714/) and families telling their stories, we can collectively manage some solutions to the problems.  The problem is not only among the “no paid caseload”  but is widespread throughout our communities.
Below is an excerpt of a letter that I have sent to Ed Holen,  Executive Director of DDC and Sue Elliot, Executive Director of The Arc of  Washington.  My hope is that the lack of services to those on the “no paid  caseload” is not used inappropriately by dividing the community into the “haves”  and “have nots”.  We need to unite to support a continuum of care which is  based on assessed support needs of each individual to enable them to function  optimally.

“The report on “No Paid Services” is extremely important and shows  such a critical need. This is very concerning for several reasons.


I fear  that this report will be used inappropriately by stating that those who reside  in the ICF/ID take more than “their share” of the funds and that is part of the  reason that there are so many on the “no paid services.” If this tactic is  taken, it only adds fuel a terrible fire which is not based on the  facts.


People may also take this to mean that those who do receive a  waiver receive all their needed services – this is again not true. There is a  huge difference between what an “allowed” service is and what is “approved.” In  our case having prescriptions from our son’s MD, referrals from his OT/PT,  hospital discharge recommendations were not enough for DDD to approve an  “allowed” service or piece of equipment or environmental adaptation. We were  told that DDD only paid for “needs” not “wants” yet why is DDD the one deciding  equipment or services MD, OT/PT and Psychologist prescribed were not needed?  This just mystifies me.

Another question that I have is that of medical coupons (I believe  they are called something else now – Provider One?) When our son was first  placed on paid services he had a CAP waiver (?) and with this he did receive  medical coupons which was not determined by our income. Where does this service  come in now? Do people on HCBS waivers automatically receive Provider One  Medical Coverage? Do those on the “no paid service” receive this?

As a family that has luckily survived – but only through the  finally allowed and approved services of the ICF/ID – I can tell you that the  two services that we had and were “approved” to use were Family Support funds to  pay for MCP and medical coupons which paid for diapers and the co-pay of very  expensive prescriptions, hospitalizations and medical costs. The services that  our son was “allowed” on his waiver were never “approved” and therefore he was  not able to access those services.

A study that I think would also be helpful is one of people on  waivers and if they are receiving the allowed services.

Again, thank you for undertaking this survey regarding the “no  paid service caseload” – I only ask that it be used without the biases attached  to differences in ideology. We all need to support a continuum of care which is  based on the assessed support needs of each individual to allow each person to  function optimally. “

Any  Comments or ideas?

We are Survivors – Please Support HB 2581

Please support HB 2581

 

We are survivors!

 

Much like the camaraderie people develop after living through harrowing experiences, families of Intermediate Care Facilities for People with Intellectual Disabilities ( ICF/ID)  residents also develop a bond through similar life experiences.  These families have survived crises much on their own, isolated from the mainstream life, many times holding the life of their child or sibling in their hands.

 

Only through the life sustaining and life enriching relationships and services which the residents experience in the ICF/ID, their families have finally found others who live in their same community.  Many of these families have developed camaraderie from having similar life experiences of surviving crisis after crisis.  These families know that the life of their loved ones is only supported by the community at the ICF/ID.

 

In these times of self-advocacy, person centered care and personal choice, why are some people saying that they know better than the very people who have survived?  These residents and families know how close they have come to life’s perils and have chosen to live in the ICF/ID community.  No one is forced to live there but there are many who are not able to make this choice to live there due to the ideology of those who “know better.”

 

It has been proven over and over again that the cost of these residents with their intense and complex support needs are higher than the “average” person with an intellectual disability.    Their care is expensive no matter where they choose to live but their care can be better managed in a safe, quality and cost effective manner when they choose to live in a similar community and utilize the same services.  Moving these residents will not minimize their support needs – moving them risks their lives, relationships and community ties.

 

Please allow these residents the same rights and choices as all others in our society.

 

This is for Tommy – We Care!