LTO Ventures – Live/Work/Play Communties

Today I was introduced to an organization which supports a continuum of care model which upholds the US DD Act and the 1999 US Supreme Court Decision Olmstead. 

What a breath of fresh air to hear some sensible arguments coming from other DD Advocates.

Please visit their site, read the attached letter and comment.  This group is in Nevada but their message is one that we all need to listen too.  Hopefully CMS will reconsider and provide choice to individuals and their families as stated in Olmstead.

LTO Ventures Website

LTO Ventures

LTO Ventures Comments to CMS dated June 28, 2012

Thomas is in VOR National News

Thomas has made national news reporting –

 He was featured in the VOR weekly update.

The Face of VOR

4. Thomas’ Story ——————————————- By Cheryl Felak, RN, BSN * Seattle, Washington * Dec. 31, 2011

Related Audio: From Crisis to Stabilization – Thomas’ Story  

   Thomas is my son. He’ll be 18 years old in February 2012. He has an extremely rare genetic disorder which is neurodegenerative and has early onset dementia. Throughout his youth, he has had many prolonged hospitalizations in the inpatient psychiatric unit at a children’s hospital.  Due to his developmental disabilities, they really didn’t know what to do with him.  They didn’t know about personal care. When he was 14 years old, he came home from one hospitalization with such extreme skin breakdown that it took about 5 months to clear up.  Even with a 1:1 aide in the hospital setting, they were not able to provide for his personal care adequately.  I would often arrive to see him with food on his face, food down the front of his shirt, teeth not brushed or a diaper that needed to be changed.  In the hospitals the staff are not trained to care for DD patients and particularly on the psychiatric floors where children who are dually diagnosed (mental illness/developmental disability) tend to be hospitalized.

    Thomas now lives at Fircrest, the Residential Habilitation Center (RHC) (a state ICF/MR and specialized DD Nursing Facility) near our home.  It has been a Godsend, although he was denied admission for about a year. The State’s Department of Developmental Disabilities (DDD) claimed that there were no resources for him (even though he was on a Home and Community Based Services (HCBS) waiver). Before his admission to Fircrest, DDD suggested that for the next crisis we would just have to call the police. 

   Since moving to Fircrest, he has not had to be hospitalized once and has been stable. He is so happy in his home. It has also allowed our family to regroup since our family disintegrated and my health also became life threatening in efforts to manage Thomas at home.  We have also had to file for bankruptcy.  Moving him to the RHC has enabled us to work and become productive members of our community and also be advocates for other families who are in the shoes we were in and are in.

   When Thomas was 14 years old and living at home, I recorded him during a typical manic/psychotic episode – typical for Thomas; typical for others dealing with this. During such episodes, everything becomes intense and all-consuming for the caregiver to maintain the health and safety of the child. During the episode I taped I was trying to get Thomas to go to the bathroom prior to leaving for the day camp, which he really loves. You’ll hear screaming, disorganized thought patterns, and Thomas hitting and biting himself during this taping.  I hope this audio helps people (citizens, advocates, legislators and policymakers) to hear what life is like for many of us when our child is home.

   The audio was also in response to a question by the Executive Director of an Arc chapter who asked me, “If RHCs are so great, why we don’t see people in Olympia testifying how much they LOVE living there?”

   This comment alone tells me that The Arc advocates do not understand the issue of the ICF/MR residents at all. Many of our residents are mostly non-verbal, may not tolerate the trip to Olympia, may not tolerate crowds, may not be able to maintain appropriate behavior skills for very long or may be too medically fragile to travel.

  Thomas has taught me a lot in our journey together. I’m motivated to maintain the good, compassionate home he now has at Fircrest.. I’m motivated to help others.  I founded “Because We Care – Beyond Inclusion” as one way to help.

What are Waiver Services?

One hears about the Home and Community Based Services Waivers over and over.  What are these and what services are attached to each waiver?  You can view the Fact Sheet published by DDD at this link:  HCBS Waivers

The “average” cost for the waivers is inaccurately reported in presentations by DSHS.  The most recent presentation (DSHS: Developmental Services Overview) reports the average for the Core Waiver at $6,490.  In looking at the actual report one can see that the real cost for a person on the waiver is much higher than this reported average.  Review the attached document to understand the services and the costs.

Please pay attention to the fact that not all clients on the waiver receive services, the services are only called “available” services – this means that DDD must approve costs prior to utilizing any of these services.  DDD tends to deny requests.  The client counts indicate the average number of clients over a year who were able to utilize the “allowed” services.  It’s also interesting to note the range involved in the residential costs and to see two service areas that do not have client counts at all.


Taking all this into account, one can see that the typical RHC client who would move and be placed on a core waiver would require much more than the “average” $6,490 a month as reported by DDD.

What are Waivers



Respite Revamp

In light of the devastating cuts proposed by Governor Gregoire, I will be posting ideas with innovative programs which are aimed at improving services and cutting costs.

It needs to be made clear to everyone that the costs and services attributed to the Home and Community Based Services are only “allowed” services.  This does not mean that everyone on the waiver has services.  Everything must be approved and DDD tends to deny most requests for allowed services.  When the “averages” are reported by DDD, they are extremely misleading.

My next post after this one on respite will address the HCBS waivers, what they entail, how many people actually receive services and the cost range for a variety of services.

Regarding respite:

Respite is one of those “allowed” services – yet I know very few people who actually received respite.  Our family for instance was in crisis for 3 years yet our son NEVER received any respite.  He was hospitalized instead.  I make these recommendations based on our own experience and from conversations that I have had with others in the community.  I can only speak of programs that I am familiar with and build from there.

The Seattle Parks and Recreation Department has a Specialized Programs division.  This program has been the absolute best program for our son and family.  If more programs such as this were available and people could use this approach for respite, it would serve more people, be more reliable and cost less than the current programs.

Please see Respite Revamp for my ideas.

Manic Psychosis tape

We hear so much about people with developmental disabilities.  Many advocates take family members to Olympia to meet our legislators.  There are many of us who have family members who are not able to go to Olympia to advocate for themselves.  I have been asked, if Fircrest is so great, why don’t we see residents down in Olympia?  This question was asked of me by one of the executive directors of a chapter of The Arc in our state.  Obviously she is unaware of the issues which most of our family members whose home is in an ICF/DD face everyday in their lives.

For an example, I am publishing this audio of my son.  What you will hear was very typical for every day in our house and would go on for hours and days.  Maybe after listening to this, that particular Arc executive will understand why ICF/DD residents are not able to advocate for themselves.

This is my reality.  Sound quality not the best (sorry) and audio starts at 1 minute

Medicaid Block Funding

As the Federal Government is trying to find ways to decrease costs, the issue of Medicaid Block Funding has been raised.

This is a very scary idea when it comes to funding programs and services especially to our citizens with disabilties.

I did find a very interesting comment from The Arc which is very contradictory to the arguements that they have been using in the past.  They have been saying that communtiy care is less expensive and more cost effective than congregate care.  This is actually not true and there is so much data that indicates the cost-effectiveness of congregate care for those with very complex care needs and high support needs that it is staggering.

Now, though, if Medicaid Block Funding is going to be looked at, The Arc will change thier tune.  They will say that congregate care is less expensive and block funding will force people into institutions because they are less expensive.

“States may decide to move people into institutions.  Under a block grant, rules for providing quality care could be more flexible and conditions in institutions could return to the way they were in the past.  With fewer requirements, it may be cheaper for states to care for people with I/DD in large facilities.”

So, which is it?  I know which is less expensive and have known but The Arc only decides that based on their agenda.

I do not think that Block Funding is the way to either but I find it interesting how The Arc is now saying that institutional care is cheaper.