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September 8, 2011 Meeting Notes

Notes from September 8, 2011 Waiting List Meeting

27 in attendance

Represented in attendance:

11 – Parent or Family member

1 – Self advocates (individuals with developmental disabilities)

9 – OKDHS/DDSD

1 – Oklahoma Health Care Authority

5 – Agencies supporting those with developmental disabilities in Oklahoma

7 First time attendees

Locations represented – Norman, Oklahoma City, Noble, Yukon, Mustang, Guthrie and Depew

Agency/Organizations represented: Oklahoma SoonerSUCCESS, Oklahoma SibShops,   Oklahoma Autism Network, Oklahoma People First, Oklahoma Infant Transition program, Center for Learning and Leadership/UCEDD @ OUHSC, OASIS, Oklahoma Developmental Disability Council, Oklahoma Partners in Policymaking, Evergreen Community Services, Big Five Provider Agency, Today’s Therapy Solutions, Down Syndrome Association of Central Oklahoma, Oklahoma Early Foundations.

*** Before the meeting jumped into full swing it was announced that Mr. Raymond Haddock would be retiring from OKDHS at the end of September. He has served Oklahoma for 40 years. The help he has offered families who have loved ones waiting over the years may have seemed to receive little to no recognitions, but I can say, he has made a huge difference in so many lives. Mr. Raymond Haddock has been a huge supporter and friend to those individual on the waiting list and those receiving DDSD services. He will be missed!  Mr. Haddock, on behalf of the DDSD Waiting List Meeting and the hundreds of individuals you have touched, I say Thank you!  We wish you the best in your next adventure in life!

Mr. Mark Jones will be moving into the position of Chief Coordinating Officer. We look forward to working with Mr. Jones.

Update on the Waiting List:

Jim Nicholson reported that the waiting list has moved! OKDHS/DDSD was able to use lapsed funds. So far they have worked 10 Oklahoman’s off the Waiting List. It was explained that these lapsed funds were generated from individual receiving DDSD waivered services have either moved out of state, no longer need them, or have passed away. This slight movement makes the date of application for those on the Waiting List to be April 28, 2004. This is the first movement of any kind from the waiting list in more than 3 years.  Mr. Nicholson continued by saying that this movement is not even remotely acceptable to meet the needs of Oklahoman’s waiting.

Mr. Nicholson also discussed a meeting held by the Attorney General (AG) at the request of Rep. Ron Peters. Rep. Peters had asked the AG to look into the effects of the DDSD Waiting List, those residing in the two state resources centers and those receiving limited services while in need of more. At the meeting the AG said the state could be at risk because it may not be honoring the Olmstead decision handed down by the Supreme Count in 1999.  That court decision allows for states to have a “waiting list” for DDSD services, but the states are required to have “movement” at a reasonable rate.  Mr. Nicholson said again, this tiny movement doesn’t appear to “movement at a reasonable rate”.   He also reported that at this meeting with the AG they considered several ideas of how to possibly move the waiting list over a 7 year time period. There was discussion regarding how many would have to be served, how much money that would take the state, even with the federal matching funds and the likelihood that this would be a possibility. There were questions from families regarding whether or not this would be a separate bill through the legislature or would it continue to be tied into the general appropriations for OKDHS.  Mr. Nicholson didn’t have any details about this.  It was suggested to monitor Rep. Peters action in the next session.  Mr. Nicholson ended with “doing nothing is not acceptable.”

Waiting list Breakdown

Waiting list by county 

Oklahoma Sib-Shops – Lori Wathen, State Sib-shop Coordinator

Sib-Shops are opportunities for brothers and sisters of children with disabilities and special health care needs to obtain peer support and education within a recreational context. Sib-Shops recognize that having a brother or sister with a disability or special health care needs can be a big and complicated thing. Knowing and honoring this, they are able to support those siblings in recreation and safe environment with other siblings who may have the same challenges and concerns.

Lori reported that the first two Sib-Shops were started in Tulsa with the support of Oklahoma Family Network and in Oklahoma City with the support of the Down Syndrome Association of Central Oklahoma.  Oklahoma Sib-Shops are currently funded through a contract with Oklahoma Developmental Disability Council. It began three years ago with the contract ending in another year. Lori and others continue to look for other funds and resources to continue to grow this great project.

Lori said there are currently 9 active Sib-Shop programs throughout the Oklahoma. Currently they are located in Tulsa, Oklahoma City, Enid, Stroud, Norman, Muskogee, TAFB, Piedmont, Ft. Sill-Lawton and Edmond.  If you would like more information visit www.oumedicine.com/sibshops or you can contact Lori Wathen at

Next Meeting

        The next DDSD Waiting List Meeting is scheduled for Friday, December 9, 2011 in Tulsa!

          It will be held at the Skyline Office Building. This is a new location. I encourage all those living in that region to try to come, bring other families who are on the waiting list, and be sure to invite your legislators. They are the one who make the decisions.