If you choose premium, you also choose to pay more for premium

I really hate to get into this topic because it will could be detrimental to many in the community and I really do not want to force anyone out of their home – but given that, I believe it is important for you all to know what the actual costs of care for people with high support needs is.

Yes, it is true that there are many in the community with high support needs.  I would ask you all to ask Don Clintsman or Mark Eliason to gather the daily costs for these clients and what those costs cover.  This will most likely be direct care only since that is the majority of the costs that DDD pays for.

The folks in DDD and DSHS can easily acquire this information.  They know who is the most expensive and what their costs are.  Rather than looking at the “average” for all on the waiver, look at the costs for those with the highest support needs.  I believe when you receive this information you will have a much clearer understanding of what the costs are in the community for those with high support needs.

Listen again to what Lance Morehouse said on September 25.  He stated that with the help of 19 hours a day of licensed nursing care his son was able to be at home in the community.  Now try to imagine what the cost of care for him was.  Surely it was much higher than the average cost of care for COMPREHENSIVE care in the RHC.  Just because a person with high support needs can live in the community does not mean that it is equitable and fair and if you want to talk about rationing costs and services, look at these folks too.

If families chose to use community care which is more expensive for those with high support needs, should they not be expected to pay a little more too?  Why would this be any different than how insurance companies pay a percentage?  Or when you want premium gas you have to pay a little more.  I believe if you are choosing “premium” then you are also choosing to pitch in a little more rather than taking more of your share because you can.

This is what I talk about when I say that community care for those with high support needs is more expensive in the community.  If the issues are about cost, then this issue really needs to be looked at accurately.   I would love to see a graph of the numbers of people in the community settings by their average daily cost connected to their support needs.

I do not like to talk about this issue this way because I believe it may be hurtful to many and I would never wish to force someone out of their environment due to the cost.  A human life is priceless. We do need to think about finite resources and how to share those resources better.  We hear so often that those in the RHC are taking more than their fair share but what about those in the community with high support needs?  No one talks about the piece of the pie that they are taking.

In WAC 388-845-0110 regarding limitations of the Home and Community Based Service Waivers it states:

(4) The cost of your waiver services cannot exceed the average daily cost of care in an ICF/MR.

Taking this information into consideration, I would be interested to know how many of those on the waivers have a higher daily cost than the average cost of care in the RHC. When thinking of this it would also be good to keep in mind that this would only be the DDD costs which would be mostly direct care costs.  Therefore, those in the community could have a higher cost for direct care because the average cost of care for the RHC is all-inclusive.

So, when looking at this, I wonder about what is really being spent on individuals in the community.  Is there a way to divvy up the resources that are already there to better share those equitably?  Maybe use a cap of the average daily RHC rate as the WAC states rather than let the costs for individuals get out of hand.

I fully support community care and I also have to think about sharing services so that more people can have services.  That means that some will have to go without some of the services they have had and they may need to look elsewhere for some help but it also means that there will be more to share with those who are not receiving anything.  Isn’t this the fair and equitable way?

Whoa – Senator Kline – Pull back the reins of deinstututionalization!

Senator Kline needs to have someone help him put the brakes on his road to destruction.  He is pushing for deinstitutionalization with no regards to cost or safety of this movement.  In listening to him speak in the DD Service System Task Force it is clear that his intention is to further the deinstutionalization movement, a movement which has already cost at least one person his life this past year from pure negligence, caused crisis in many families  – both those who live in the RHC and those in the community, and will continue to contribute to the crisis unless he is reined in and deprogrammed.

How many of you use a computer which looks like this one?

Or a cell phone such as this one?

If you were going to talk to others about computers and cell phones would you talk about the examples above?  I don’t think so.  I wonder why, then, that Senator Kline and other DD Advocates who push for deinstitutionalization with no regard to cost or appropriate care refer to institutions as this:

This is the photo The Arc uses when they refer to the ICF/ID

This is the photo that Disability Rights Washington uses when they refer to the ICF/ID

The photos below are taken at Fircrest Residential Center in Shoreline, one of our states ICF/IDs.  Do these look like the institutions above that The Arc and DRW speak about?

It’s time that those who are pushing for the deinstutionalizatoin with no regard to cost or care, reacquaint themselves with reality.  Their perceptions are as far from reality today as the computer and phone pictured above are from our computers and phones of today.

 

Please see the page entitled DD Service System Task Force for more information on this critical issue.  

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

DD Systems Task Force – Stacked panel

Tomorrow is the second meeting of the DD Systems Task Force in Washington State.  This task force was created from legislation SSB 5459 in 2011 which closed one of our states Residential Habilitation Centers (RHCs)  and  denied access to services for those under 21.

Agenda for September 6, 2012 meeting

SSB5459 Overview

This task force is faced with the task of reporting to the legislature in December 1, 2012 and they are just now getting underway.  This tack seems overwhelming to me.

I would love to attend this meeting but I work.  As in most every other decision that has been made regarding the lives of our most vulnerable citizens, the decision are made by those who do not work or live with these individuals.  The decision makers are people who work in other areas of DD advocacy and part of their job is to go to these meetings and hearings.  They are paid to attend, have their travel expenses paid and probably a per diem.  The advocates who are the experts in caring for our most vulnerable citizens and who understand the intense support needs are either busy caring for their loved ones or work in other jobs – jobs that do not allow them the freedom to travel to Olympia to be involved in advocating for our most vulnerable.

This imbalance contributes to our crisis situation.  On this panel, there is one person who is not a paid advocate.  She has to pay her own way to these meetings and she has to travel across the state.  I believe all others are able to attend as part of their jobs.  Is this really an evenly balanced membership?

Since I will be working at my nursing job tomorrow, I am unable to attend.  I have submitted the following letter and have attached the charts which illustrate the issues which I wish to address.  I do hope that the task force members have a chance to review this information and ask me for any clarification if needed.  I will be anxious to hear how the meeting goes tomorrow.l

 

September, 4, 2012

Dear DD Service System Task Force,

 

I am unable to attend the meeting on September 6 but would like to submit the following comments and concerns regarding the future use of our Residential Habilitation Centers. I am an advocate for a continuum of care which means that I believe we need to have a place for safe, stable, sustainable and cost effective support for all levels of support care needs of our most vulnerable citizens. A continuum of care means that I advocate for all levels – from the most intensive support care needs at the RHC to community homes to family homes. We cannot exclude one group based on support needs or age but must find a way to address the spectrum of needs and a continuum of care system does just that.

 

The main two issues that I would like to address are that of acuity (support needs) and age of clients.

Acuity (Support Needs)

1.   The report entitled “Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings” has some excellent information in it. The problem with this report is that the authors wrote “key findings” which are not supported by the data in the report. They also incorrectly combined the three environments which were studied and into two environments to report the “key findings.” My comments and concerns regarding this report which is often referenced are attached. In addition I have attached charts which look at the data in this report. From these charts, it is clear to see that the support needs of the those in the RHC are significantly higher than those in community or “other” residential settings.

 

2.   In reviewing the Certified Residential Providers Cost Reports submitted each year to the Division of Developmental Disabilities I have made a graph of the acuities and costs from these reports. It is clearly evident that the acuities (as reported as resident hours per day) in the community homes are much lower than the acuities of the residents in the RHCs. One reason for this is the number of residents who have high acuity levels in 3 or more assessed areas of support.

When measuring acuity in 7 areas of care, there is a major difference between a person who has high acuity in 1 area and low in 6 areas and a person who scores high in multiple acuity areas. This fact is not addressed in the report by Lucenko and He but by looking at the data they present I have been able to get a rough estimate of the number of residents who rank high in 3 or more areas. The results of this are staggering and one can see the significant difference between the residents in the RHC and the residents in community residential settings.

Each additional area in which a resident scores “high” can exponentially increase the level of support care needs for that individual. Yes, there are many who live in the community who score “high” on at least one area assessed but for those who score “high” in 3 or more assessed areas, their care may be best addressed in the RHC – a facility which provides more stable and sustainable care and is cost effective for these high support needs individuals.

3.   As the acuity levels increase, the cost of care to safely care for these individuals increases too. This fact is evident in the information that the providers submit to DDD for reimbursement. Please see the attached information entitled “Cost of Care for 2011 for DD Task Force.” It documents the cost and the reported acuity level of the residents in each facility.

4. The increased cost of care is documented in the Support Intensity Scales data. This is measured in the section entitled “Exceptional Support Needs”. Graph on attached document.

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.

 

Thank you,

Cheryl Felak, RN, BSN

Seattle, WA

 

 

 

This means that each resident, on average, scores high in 3.6 (RHC), 2.1 (Community)  and 1.6 (Other) areas assessed.  Each additional “high” score greatly increases the overall support needs of that client.  These areas need to be looked at as a “whole” and from this picture, it is clear that on a “whole”, the average RHC resident has a significantly higher support need than the average community or “other” resident.

 

 

 

 

 

 

 

These “exceptional needs” score only mean that for the same score assessed, these are exceptional and the cost of care for these individuals will run higher than a person without this “exceptional needs” score.  One can see that the residents in the RHC have higher “exceptional needs” than those in community or other.

 

 

 

 

 

 

 

 

 

Information for the chart above is taken from Support Intensity Scale

 

 

Works Cited

Barbara A. Lucenko, P. a. (2011). Assessment Findings for Persons with Developmental Disabilities Served in Residential Habilitation Centers and Community Settings. Department of Social and Health Services. Retrieved from http://www.dshs.wa.gov/pdf/ms/rda/research/5/36.pdf

Support Intensity Scale. (n.d.). Retrieved from American Association on Intellectual and Developmental Disabilities: http://www.siswebsite.org/cs/SISOnline