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

4 comments on “DD Task Force – Updates and Concerns

  1. Bob says:

    Thanks for sharing this information. We cannot allow the public resources available to Washington Families to be contracted out and privatized. We know what happens to our families when that happens.

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  2. Sarajane46th says:

    Excellent stuff, Cheryl. Very moving description of “Tommy’s home!”

    Sarajane

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  3. Connie Allison says:

    Cheryl, I was also not able to attend the Task Force meeting and am so glad you posted this. Under the Choice of Care in the Community, I think the system does allow choice but doesn’t facilitate it very well.

    Right now, the waiver referrals to community living support are linear with a family to DD to vendor progression resulting in presenting options to families the openings that are available and the family or guardian decides if it is a good fit or not. In making that decision, you have to weigh all these factors at the same time:

    Is the agency one that is qualified to support your son/daughter/ward?
    Can they support your person in extreme crisis?
    Is the agencies “culture” one that matches your own?
    Do they have good policies in place for operations and staffing?
    Is the home’s location in a good setting within the community and not in a low income blighted area?
    Does it offer living space that fits preferred activities for your son/daughter/ward?
    Who are the current roommates? Keep in mind, the agencies cannot devulge much about their care needs and interpersonal skills and abilities to be a compatible roommate of your son/daughter/ward.
    Can your person afford the rent?
    Is the location close enough to your family?

    I use the word “ward” to remind us that parents are not the only ones having to ask these questions, and with the hope that non-parental guardians are asking these questions, which depending on who the guardian is, they may not be as thorough. One can only hope…

    I have asked around why we cannot build a system that encourages people to build the households family to family and then look for the contracted provider. Create a DD housing exchange or community board could be hosted somewhere to match people. This seemed like a logical solution to me.

    But my respected contacts with residential vendors that I know tell me this approach could create havoc as households would be dissrupted, people would be moving around a lot leaving housemates and agencies in financial stress. The vacancy in the household moved out of impacts staffing and rent/utilities contributions for that household and perhaps for some time if a new referral doesn’t come along anytime soon. The agencies deal with this all the time anyhow, but it means they are compelled to combine households out of necessity and perhaps closing that gap for them is a crisis that may override considerations for the match of the people they are combining. Here is where the outcome is driven by the culture of the agency and the advocacy skills and williness and ability of the person’s guardian.to weigh in.

    I think for this reason, parents and advocates need to create that community exchange and drive the process more. This will certainly be disruptive to the system, and the many great vendors there are supporting our sons or daughters will be pressured, but I see this as the way to change the direction of community supported living to truely be more person-centered as it is supposed to be.

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    • Thank you, Connie for this information. It is VERY helpful.

      I agree that parents/guardians need to drive the housing more too – I know there are some that have done that but I also think it takes SO much more energy and many parents/guardians are already past the ability to give anymore.

      Maybe there could be a parent/guarding housing committee to help other families with an idea such as this. I know that I think about alternatives all the time. I don’t particularly like having my son in a state institution in which all ideas and changes need to go through a long line of red tape in order to make any changes. I also do not particularly like that I have no idea about other residents other then what I personally witness. That would be the same in a group home too. I asked about that when touring them looking for a place for our son. In moving into a home you have no idea about what type of roommates there are are you are given no information. I wasn’t even allowed to go there when the other residents were home since they were non of my business. Yet, I believe it would be wise to know who your ward is moving in with and if the people may get along.

      Please send your comments to the Task Force. You can email all comments to Brittany Yunker (brittany.yunker@leg.wa.gov) and Kathleen Buchli (Kathleen.Buchli@leg.wa.gov) and they will forward to the Task Force Members.

      Thank you again for your very insightful comments.

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