King County DD Wrap up for The Arc of King County Legislative Forum 2014

Letter to King County Legislators – December, 2014  (letter sent as a wrap up after watching the forum on TVW)

Thank you very much for attending the King County Legislative Forum on November 24, 2014. I was unable to attend and present some information regarding critical needs and access to services for many in our communities but do appreciate the opportunity to share the information with you at this time.

With Governor Inslee’s budget proposal it is clear that we will again be looking at more cuts to services for people with Intellectual/developmental disabilities. It is critical to have accurate information regarding community care, respite, crisis care and cost of care in order to make informed decisions.

What is most concerning to me is that facts are not being shared regarding access to and cost of care – particularly for the much needed respite and crisis care. I have gathered the information below in hopes of sharing some solutions to the problem. You heard some heart wrenching stories, particularly from Janice Lawrence and Laura Jorgenson regarding lack of respite and crisis care. My family, too, has experienced these issues – my son faced jail as the only option left for “care” as a 14 year old with profound intellectual and developmental disabilities. Multiple and prolonged hospitalizations were our crisis care until the denial of services was able to be appealed and he was admitted and stabilized at a Residential Habilitation Center (RHC). I understand the agony of these families in trying to secure appropriate care for their children and I work hard to advocate for this care.

You may recall in 2011 our state passed 2SSB 5459. There was quite a bit of controversy regarding this bill for several reasons – mainly closing of the Frances Haddon Morgan Center (FHMC) based on “cost savings” which never materialized and a state law which goes directly against Centers for Medicaid and Medicare Services admission of eligible clients into the Intermediate Care Facility for those with Intellectual Disabilities (ICF/ID) or the Residential Habilitation Centers (RHCs). Washington State passed a law prohibiting those under 21 from admission to the RHC, regardless of choice and eligibility requirements being met.

The plan was to open up several crisis care centers for youth throughout the state. This plan was not fulfilled – again for several reasons but mainly because there was NO cost savings in closing FHMC from which these crisis care centers were to be funded.

Developmental Disabilities Administration was able to secure one home in Lakewood which can care for only 3 youth at a time. Since opening this Crisis Care Center (you heard one mother, Janice Laurence, talk about her son’s utilization of this center) in December 2012, 12 youth have been able to access these services. Of those 12, only one was able to return to the family home – all others either went to an RHC or a licensed residential home for youth. The daily cost of care in the Lakewood Crisis Stabilization is $1,165.

Frances Haddon Morgan Center (which today sits empty and unused) was able to care for about 22 respite clients per month for a cost of at a daily rate of $541 (federal and state costs combined) – clearly, utilizing the RHC for much needed respite was not only more cost-effective but much more accessible to our communities in need.

Data taken from the Executive Management Information System also clearly indicates how our RHCs serve those in our communities throughout our state. We often hear about the number of “permanent” residents in the RHCs but rarely hear about the much larger numbers of community residents who receive much needed crisis care and respite care. The community members served in our RHCs are more numerous than the numbers of permanent residents served in the RHCs. Also, the RHCs can provide this expert and comprehensive care at 46% of the cost for similar care at the Crisis Stabilization Center in Lakewood.

It only makes sense to continue to utilize the facilities we have and use them to capacity to best serve our communities in need. Closing or consolidating our RHCs is not the answer as evidenced by the wasteful “experiment” we have experienced due to passage of 2SSB 5456.

number of community members who access respite services

Average Daily Cost of Care for Respite

References:

Data received from the Department of Social and Health Services, Executive Management Information System with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions

Report to the Legislature – December 5, 2011

TVW.org 25th Annual King County Legislative Forum sponsored by King County DD and The Arc of King County

http://54.185.64.84/index.php?option=com_tvwplayer&eventID=2014110041

Where’s the Respite Care?

We hear that many people are in need of respite care and I’m sure this is true.  I know that when my son was at home the thought of having respite care provided was just a dream.  Even though he was on a Home and Community Based Waiver which included respite, he was never approved to have respite.

With respite “beds” in such dire need, it is mind-boggling to me that those who need respite and some major advocacy groups still desire to close the Residential Habilitation Centers (RHCs) in our state. They are oblivious to the facts that the RHCs are part of the continuum of care, providing care for many from various community settings.  If they are aware of the facts and they advocate for closure or consolidation, they are really advocating against safe and appropriate care for those who need respite.

For the time period from July 2012 through August 2014, there has been a steady rise in the respite care at our four remaining RHCs.  Yakima Valley School, the RHC which has most recently been “studied” for closure, serves an average of 34 community respite clients per month.

When talking about the RHCs these so-called advocates talk only about the permanent residents of the RHCs.  We hear that there are only 70 people at Yakima Valley School – forgetting that over the past 2 years there have actually been 920 people served there.  Many more people from the community are served at Yakima Valley School than permanent residents.

This is a part of the discussion that needs to be heard.  The RHCs are part of the continuum of care and serve many people who reside in the larger community.  Without the RHCs, where would these people receive the much needed respite?

Cleints served at Residential Habilitation Center

 

The cost of care in the Residential Habilitation Centers is mostly for community care – the permanent residents are less than 50% of the number of clients served.

If The Arc chapters and the Developmental Disabilities Council continue to advocate for consolidation and closure of the RHCs, they are only advocating for fewer and fewer services, both for those in the community and those who are the permanent residents of the RHCs.  Where would all the people go and receive care?

Data from Executive Management Information System – Department of Social and Health Services

Washington State

July 2012 through August 2014

Why didn’t you use your award?

92% of the families who received Individual Family Support funds used less than 80% of their award.  41% used nothing.

I want to ask these families why they didn’t use these funds.  I cannot imagine that they didn’t need the money so there has to be some reason why these families did not access these allowed funds that were awarded to them to help with the care of their family member with developmental disabilities.

IFS Level

# clients

Current Award

Number of clients and the percentage of the award they used in the plan year

0%

1-20% 21-40% 41-60% 61-80% 81-100%

1

141

2000

76

24

12

10

6

13

2

319

3000

144

60

42

32

18

23

3

485

4000

176

108

74

65

28

34

4

203

6000

74

39

28

24

20

18

 total

1148

470

231

156

131

72

88

This chart was taken from the Rule Change WSR 13-17-062

WSR 13-17-062 (1)

I cannot believe that these families did not need these funds yet this is apparently what DDA believes.  Without knowing why these funds were not used, how does DDA know that the families who unused funds will be re-distributed to will be able to use these funds?

Or is this just an attempt to “serve” the unserved without actually “serving’ them.  Looks good on paper but in reality is nothing.

Please contact me regarding information you would like to share regarding your IFS funds.  I am collecting responses (can me anonymous) to make a report.

1.  What was your award amount?

2.  How old is your child?

3.  What is the child’s disability?

4.  What did you use the funds for?

5.  Were funds denied for services or equipment you requested?  If so, what was the reason?

6.  Were you able to find services that you needed?

7.  Was the lack of service providers or quality of service providers an issue in being able to utilize these funds?

If you are willing to answer the questions above, I would appreciate it.  This will help with insight into the problems with this program and how to help those in need.

You can contact me at:

becausewecareWA@gmail.com

Rule changes to serve “the unserved”

rule making

 

Washington State Department of Social and Health Services and the Developmental Disabilities Administration (DDA) has posted immediate rule changes to increase the capacity of families enrolled in the Individual Family Support Program (IFS).  The reason behind this change is to “enable families to continue caring for their family members in their own homes and help stabilize families and individuals who are experiencing increased caregiving stress and crisis by providing respite from their caregiving duties.” I wholeheartedly support the idea behind this rule  change but also understand that this is an attempt of too little, too late and does not even address the real issue.

DDA states that the families receiving funds at this time are not utilizing their full “awards”.  DDA reports that only 55% of the IFS funds were used for respite and that  only 8% of the total number of families have used 81-100% of their awards.  (see attached for full explanation and percentage of funds utilized) WSR 13-17-062 Rule Change for IFS

It is extremely unfortunate for our families in need that the right question is not being asked and therefore, the solution DDA proposes will not address the problem.

The right question is – When you have families in need and they are awarded funds for services which would help relieve some of their crisis, why are they not using the funds provided?

Asking this question might give some answers to the problem.   DDA skipped this important question in determining a solution. DDA has concluded that since these families are not using the funds, they don’t need them and so DDA has decided to reduce the award and give the unused portion to other families in need.  On the surface, this is a logical solution, but again, it is not the answer to the question that needed to be asked.

The real problem is that our state has put a limit on the number of caregiving agencies families are allowed to use with these funds. These contracts are only opened up every 3 years so no matter how much money is awarded,  we do not have caregivers who the state will allow these families to use these funds for.  We do have caregivers available, but since the state has closed their contracts, these families in crisis can not access the use of these qualified caregivers.

I know this for several reasons – as a family who had been awarded funds for respite and not being able to hire a contracted caregiver I was well aware of the situation in the family.   The funds were useless without a caregiver to use them for.  In no way did this mean that we did not need a caregiver  – it meant that there were no qualified, contracted caregivers available.  This not only drove us into deeper crisis.

Now I work for a Home Health Care Agency.  We are licensed, bonded, run extensive background checks on our employees and all caregivers are certified nursing assistants who are supervised by a registered nurse.  I was excited to work for this locally owned and operated agency for several reasons  – one of which was that I could be part of the solution (or so I thought) to the caregiving crisis experienced by our families.

What I found out was that DDA contracts  (although supposedly the waivers are participant driven with respect to choice of providers) were not available.  We were informed that Roads to Community Living, COPES and the New Freedom waiver had sufficient caregivers to serve their clients.  We were denied a contract with the Health Care Authority based on a WAC which pertained to agencies which had their contracts terminated ( given this was our first application this WAC did not even pertain to our agency).  We still have not had an answer to our inquiries and are bounced between various people – no one being able to give accurate information.

 

No wonder our families are in crisis – the Department which is there to help them and navigate them through crisis does does not know their own rules, policies and how to connect a quality care agency to those in need.

So, DDA has a long way to go in trying to solve this problem.  Given that they do not even know the questions to ask to investigate what the problem is and make up solutions to non-existent problems, there is little hope for improvement.