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 ( 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?

Mama Bear is Showing Up!

Happy Mother’s Day –

Every one knows how ferocious a mama bear can be protecting her cubs and knows to get out of the way.  I’m feeling like that mama bear right now and getting madder and madder.  Someone is attempting to hurt my child – not just my child but the children of many of us and it’s time to step back or it won’t be pretty.

I’m tired of being nice and playing the game.  I’m tired of DDD case managers denying services to children and adults who are needing services and who are approved for those services yet DDD continues to deny them.  I’m tired of the  DDC acting as if they know what’s best for our most vulnerable citizens yet shunning and censoring information from the experts – parents and caregivers.  I’m tired of so-called “disability advocates” from The Arc chapters behaving as if they care about our most vulnerable citizens and I’m mostly tired of all people from those agencies deliberately causing harm to our citizens.

I can tell you that a DDD case manager wondered why I didn’t restrict fluids from my son so that he would not wet his bed.  This was not just a little wet, this was a monster wetting which necessitated laundering every bit of bedding every day due to being soaked.  This was not a case of simple bedwetting but a case of neurogenic bladder that only relaxed at night so that was the only time he could really empty his bladder – while he was asleep – the only time his body ever relaxed (that is if he did sleep.)

This is the same DDD Children’s manager who I overheard tell my son’s case worker “do not offer them anything.”  That was after a meeting I had with them while he was hospitalized his for the 5th time in Seattle Children’s Inpatient Psychiatric Unit, psychotic and manic.  We had looked at Fircrest for him, we and his healthcare team knew it would be the best place for him – particularly since we had been told that another hospitalization would not be approved.  Our son was 14 and the DDD Children’s manager said “DON’T OFFER THEM ANYTHING?”

What is wrong with this picture?  Whatever it is – it needs to change and I’m doing my best to make changes.  Just as Ed Holen and Sue Elliott from the DDC and The Arc say on their Olympia Insider videos on Youtube “Change is made by those who show up.”

I’m going to be showing up!