Our Families need RESPITE

Many, many families can be helped with just a little bit of stable, reliable respite.  Please support HB 1546

There are options that need to be looked at so that families can receive respite – it is not enough to just add hours without finding a way to provide that respite to families. Families who are already eligible for respite hours do not have enough providers.  We need to look at ways to improve the system to make respite accessible and reliable for families.

When respite providers make little more than a babysitter (this may not be true – a teenage babysitter may make more than a respite provider who is providing care to adults and children with challenging special needs) it’s no wonder that families cannot find or keep a provider.

What happens is families stay home to provide care for their child.  Typically, when your child develops and grows, when they are teenagers you are able to leave them alone for awhile.  Not so with our families.  We need to be there when our child comes home on the bus.  We need to be there all afternoon and evening.  Jobs are lost, opportunities for siblings are lost.  It’s not just watching them – it’s making sure they are toileted, making sure they have something to eat, making sure they are safe, making sure they have their medications and more.  It’s being attentive and involved in their care and well-being, keeping them active and engaged, interested in activities and helping them along the way, giving needed supports.

Without respite our families are becoming socially excluded – isolated from community.  This is not what the inclusion movement was intended to do but it has become the reality for many families.

One mother testified very frankly to the DD Service System Task Force on October 23, 2012.    You can hear how grateful those who are able to have respite are and also the difficulties they face and will continue to face with our current system in place.

Please take a look at other options:  in-home or facility based are not the only options available.  Many more could access respite if DDD partnered with schools, community centers, city park and county park departments.  The Seattle Parks and Recreation Specialized program is the program that I am most familiar with.  This program has been the best respite for our son – not only providing stable, reliable care with experienced providers in working with the DD population but they have provided many group activities, experiences and outings that we would never have had the energy to do.

With this center-based or activity based respite  (although it was not paid for by respite hours – we paid for it) was the best option for not only our son but our family.   Specialized Programs also offers day camps and overnight camps every summer.  Every year we see staff members return to take part in these events.   It would be wonderful to develop more programs such as this to provide stable respite care with trained providers for our most vulnerable populations.

By utilizing a center based respite we could pay the providers more than minimum wage which would add to provider stability,  have transportation to and/or from school for after school respite, provide respite right in the community, provide meaningful activities, have staff support (thereby not relying on one person to show up at your house – we have all experienced the unreliability of this situation which only adds to the family’s stress) and there are more eyes on everyone to help with prevention of negligent care.

By sharing resources and pooling resource the resources will go much further and benefit many more by making these services accessible.



DD Service System Task Farce

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

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


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

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

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

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?

Please Listen to Us!

I am attaching some very interesting documents.  What I would love to know is if the Department of Social and Health Services and The Department of Developmental Disabilities are listening to the people they are serving.

To me, from looking at the Joint Legislative Audit and Review Committee (JLARC) DDD Assessment Report dated January 31, 2009, it clearly outlines the numbers of people and the programs and services requested.

JLARC Final Report 013109 DDD assessment

This is what I find very interesting and confusing:

Program Requests:

ICF/MR – 20

Roads to Community Living – 1

Service Requests:

RHC or ICF/DD services – 40

Roads to Community Living – 1

Looking at what was requested by the people, it is clear that the people are requesting the ICF/DD services much more than the Roads to Community Living Services.  Why then, is the Department downsizing the ICF/DD’s and putting thousands of dollars into the RCL program?  Why is the State of Washington spending over $250,000 on a “Family Mentoring Project” for the Roads to Community Living when it is clear that the people involved are not even asking for this? Is this being a responsible steward of our public funds? Is this being cost effective?

It is time to listen to those who really receive the services and programs – not those who masquarade as their advocates.  The people have clearly spoken and they are asking for the services in the ICF/DD’s.

Please Listen to Them!

Number of Programs which DDD Clients Access:

Number of progrmas which DDD clients access

Other DSHS Services Received by DDD Clients:

Services Received by DD Clients in FY 2008

DDD “No Paid” Service Client – The Silo Effect

We hear a lot about the “no-paid” services and the many DDD clients who are on this list.  Most recently, Sylvia Fuerstenburg, Executive Director of The Arc of King County, referred to the this group in a recent blog posting – “ In Washington State, 13,600 people – in King County, 3768 people – are eligible for paid services but are not receiving them due to the lack of state funding.” 


I asked Sylvia for her sources on her figures but she was unable to cite a source for her numbers.  I have gone back through various DSHS reports, JLARC Audits and DSHS reports to figure out what makes up this group of people who much is written about but little is known about. 

The most recent figures that are available are from the January 31, 2009 report “DDD Assessment.”  This report was prepared in response to recommendation #1 in “Division of Developmental Disabilities – Analysis of How Services are Prioritized” report by the Joint Legislative Audit and Review Committee, issued July 31, 2007.

Assessments on no paid services – 1307

Assessments for clients on paid services – 39,711

Total clients assessed – 41, 108.


Roughly 2/3 of DDD clients who do not receive paid services through DDD DO receive paid services of Medical and/or economic supports (JLARC, 03-6, page 12)


Discussions about the adequacy of services to the DD population focus almost exclusively on the services provided by DDD.  But as with most clients in DSHS, DD clients tend to use the services of many parts of DSHS.  This is a package and in order to assess the services it is critical to look throughout the DSHS programs and not just one division, as DDD does when talking about services to DD clients.  Eighty-one percent of the DD clients use services managed and budgeted for by other parts of DSHS. (JLARC, 03-6, page 9)

I do know that there is a portion of the DDD clients who are on a “no-paid service”  This term is very misunderstood and this number is misinterpreted by many to mean that these people are eligible for services, want services or do not receive any services.  This group is “no-paid service” for a variety of reasons.

The clients on the no paid service have had some contact with DSHS and at some point the Division had determined that the individual met the criteria of having a developmental disability.  However, the Division may have had very little contact with that person after the initial determination and the Division has very little knowledge, if any, about the level or need of service or even if that person has interest in receiving services from the Division (JLARC, 07-4, page 9)

Some people seek eligibility for DDD even though they have no need at the time but use this as a method to speed up services if they might require services in the future.  These clients, even though they do not need services are considered “no paid” clients and therefor counted as clients with unmet needs. (Fact sheet 5.29f)

According to DSHS and DDD documents and audits that have been done, DDD is unclear as to what this number really is anyhow.  The documentation has been so poor and disjointed that no-one in the department was able to make heads or tails of what any of the numbers meant.

Due to a Joint Legislative Audit report, priority was given to trying to locate these “no-paid” clients, have them assessed as to what their needs were and then support them as need be.  Many of these people do not even need services, some refused to have the assessment done, others may have a developmental disability but their needs are not so significant as to be eligible for paid services. 

Another issue is that many of these clients do receive services from other programs within DSHS.  This includes medical, economic aid and food stamps.  Due to “silos” of the various services within DSHS, one department is not aware of services that their client may be receiving from another department. (Fact sheet 5.29fs)

Persons for whom the Division is providing no paid services and who have no service needs are presumed to be persons who are capable of meeting all their own needs, or whose needs are being met through other DSHS division not included in the DDD assessment, through personal or community resources. (fact sheet 5.29

The lack of effective coordination and management of the package of services provided by DSHS was highlighted in the Joint Legislative Audit and Review Reports.  The creation of these “silos”,  not only makes it difficult for clients to navigate the maze but almost impossible for policymakers to get a “picture” of the package of services provided to DDD clients since they are only exposed to the DDD Silo of programs and not made aware of the other programs from which DDD clients receive benefits. (JLARC, 03-6)

Below is a current chart, provided to me by DSHS, indicating the number or programs which DD clients receive benefits from.  You can see that 79% of DD clients receive services from 2 or more programs within DSHS.  This is a fact that is not presented when DDD and some Advocacy agencies talk about services to DD clients. 


Developmental Disabilities Clients Receive Services from Multiple Programs
FY2008 (July 2007 – June 2008)




Client Count























Total Clients



Source:  Washington State Department of Social and Health Services,Research and Data Analysis,

Client Services Database analytical extract of 3/5/2011.

Throughout the reports over the past 9 years, it has been fairly consistent that about 2/3 of the clients who DDD reports as “no paid” clients receive benefits and services from other DSHS programs and very little effective coordination of these benefits is taking place. (JLARC, 03-6)

While it  certainly is true that not all needs for DDD services are  being met,  it is important to recognize  and dispel the myth that the majority of clients counted in DDD’s   “No Paid Services” category are in need of services that they are  unable to obtain.  The fact is  that the opposite is true.  The majority  are already receiving   services  from other DSHS divisions and/or  they are listed, but  not  currently in need of any service .



An analysis of Unmet Service Needs for Washington State’s Division of Developmental Disabilities.” Fact Sheet Number 5.29fs.
“DDD Assessment” Report to the Legislature. Prepared in Response to Recommendation #1 in
Division of Developmental Disabilities – Analysis of How Services are Prioritized”
Report by the Joint Legislative Audit and Review Committee, issued July 31,2007. January 30, 2009
Joint Legislative Audit and Review Committee. “Performance Audit of the Division of Developmental Disabilities” Report 03-6.                                                                            http://www.dshs.wa.gov/pdf/adsa/ddd/JLARC_PerfAudit.pdf
Joint Legislative Audit and Review Committee “Division of Developmental Disabilities” Analysis of How Services are Prioritized” Report 07-9.
Joint Legislative Audit and Review Committee. “Division of Developmental Disabilities:  Analysis of How Services Are Prioritized” Interim Report 07-4.