NOTES

OKDHS / DDSD Waiting List Meeting

Thursday – March 22, 2012

6563 WAITING

37 in attendance

Represented in attendance:

19 – Parent or Family member

5 – Self advocate (individuals with developmental disabilities)

1 – House of Representatives

3 – OKDHS/DDSD

1 – OKDHS Commission

7 – Agencies supporting those with developmental disabilities in Oklahoma

1 – Agency representing child advocacy in Oklahoma

First time attendees – 10

Representing someone on the Waiting List – 14

Locations represented – Norman, Oklahoma City, Edmond, Tulsa, Ardmore, Stillwater, Depew, Kingfisher, Mustang, Midwest City, Anadarko, Blanchard, Noble, Rush Springs

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC,  Oklahoma People First, Oklahoma Community Providers, Oklahoma SoonerSUCCESS, Oklahoma Partners in Policymaking, Oklahoma Infant Transition Program, Oklahoma Family Network, Oklahoma State Department of Education, Oklahoma Autism Network, Excel Learning Center, Excel Special Services, Apex Inc., Today’s Therapy Solutions, the Bridges Foundation, Child Advocacy Centers of Oklahoma, OASIS

•  Recent Events with OKDHS Management – Mark L. Jones

Mr. Jones explained that the OKDHS Commission is the governing body for DHS. Each commissioner is appointed for a 9 year term. The commission appointments are staggered so that one will roll off each year with a new appointment that same year. Mr. Jones also explained that the Governor is the appointer for each commission and also choose the chair of the Commission. This year Mr. DeVaugh will have met his 9 year appointment term and will roll off the commission. Gov. Fallin will then appoint to fill his position.

Mr. Jones continued to explain that to DHS Commission also is the body who will decide who to hire as director of OKDHS. They are also the one who chooses the Interim director after the retirement of Director Hendrick. It was announced that day, that Interim Director, Commission Terri White has stepped down as Interim Director of DHS because of a statute that would not allow a person to hold two directorships a the same time. Terri White is the Commissioner of Oklahoma Mental Health and Substance Abuse Services. Mr. Jones continued by saying the director of the Office of State Finance will be taking a temporary leave from that position to serve as Interim Director of OKDHS.

•  Update on the Waiting List – Jim Nicholson, DDSD Director

Mr. Nicholson reported that the application date for the Waiting List is June 2004.  He talked about the issues challenging the Southern Oklahoma Resource Center (SORC), which is the need to have the center fully “sprinkled” to meet the federal requirement to maintain federal funding. He reported that there have been many meetings with the Parent – Guardian Association from SORC and their only request is to keep the facility opened and improved. The deadline for the sprinkler system to be installed is August 2013.  Mr. Nicholson reported that OKDHS/DDSD has presented three plans to address the issues at SORC to the DHS Commission and all three have been rejected. He also explained that there was a “Joint Resolution” with a voice vote that state the Legislature wants to “reject” the OKDHS/DDSD proposal which would greatly reduce the residents at SORC.

• Family Questions & Comments

Families were reminded of the upcoming Developmental Disabilities Awareness Day at the Capitol. It is scheduled for April 11, 2012. All are invited and the topic will focus on the Waiting List.

Families were invited to tell their stories:

One mom spoke about her adult son who graduated from high school several years ago and he has no program or activity during the day. He only receives SSI which should cover his living expences but they are having to use some of those funds to pay for him a day activity program a few times a week. This mom is eager to get back to work once he comes off the waiting list.

One mom spoke about of friend she is trying to help who is dying with end-state liver disease. This woman’s son is a young adult with developmental disabilities and is on the waiting list. It was asked whether or not this child would qualify to move up the waiting list with the grave nature of his mother’s medical condition? It is thought so, and advice was given to bring back to the mom.

A single mom from Payne county spoke about the challengers she has with her daughter. She said her daughter hasn’t been in school full-time since last November due to her complex high support needs. She is trying to work but isn’t able to due to her daughter’s situation. When asked how her daughter sleeps at night, and if she actually gets rest, this mom replied with “what’s that?” The group had conversation about the lack of sleep and the stress this can cause to a caregiver of person with developmental disabilities.

Another mother reported her daughter, who was in attendance, can go days with no sleep. When asked how do you keep her safe, this mom said she stays awake as much as she can to keep her safe but does fall asleep from time to time.

Another mom reported that her soon graduate from high school and lose all the therapy he is currently receiving through the school. She is very fearful that when those therapies are lost, he will regress and stop talking and go back to the way he was. She is very afraid for her son.

Lastly another mom asked about the Department of Justice and why are they not looking at Oklahoma. There was a little discussion about how a parent can contact the DOJ to inquire about what they can do.