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March 10, 2011 Meeting Notes

OKDHS / DDSD Waiting List Meeting

Thursday – March 10, 2011

33 in attendance

Represented in attendance:

17 – Parent or Family member

5 – Self advocates (individuals with developmental disabilities)

4 – OKDHS/DDSD

2 – Oklahoma Health Care Authority

4 – Agencies supporting those with developmental disabilities in Oklahoma

1 – Oklahoma House of Representatives

12 First time attendees (8 – Waiting & 4 – agencies)

Locations represented – Norman, Moore, Noble, Edmond, Depew, Oklahoma City, Tulsa, Kingfisher, Woodward, Del City, Jenks

Agency/Organizations represented: Oklahoma Infant Transition Program, Oklahoma SoonerSUCCESS, Oklahoma SibShops, Oklahoma Family Network, Oklahoma Autism Network, Oklahoma People First, Oklahoma Developmental Disabilities Council, Oklahoma Community Providers, and OARC.

Status of the Waiting List – Jim Nicholson

As of march 2, 2011 there are 6,050 on the Waiting List

Waiting Time: (as of 12/31/10) 5,997

Waiting Time: Ages of those Waiting:
< 1 years = 727 or 12% Birth to 18 years old = 3,060
1 to 2 years = 1,046 or 17% 19 years to 55 years = 2,750
2 to 3 years = 932 or 16% 55 years and older = 187
3 to 4 years = 1,087 or 18%
4 to 5 years = 883 or 15%
5 to 6 years = 805 or 13%
> 6 Years = 517 or 9%

Waiting List Breakdown as of Dec. 31, 2010

For those legislators or anyone else who needs this information, here is a breakdown by county of those on the Waiting List.

Waiting List Breakdown by county as of Dec. 31, 2010

April 26, 2004 is the date of the application that is up when funding becomes available. This has not been touched since June of 2008 when the legislature released funds specifically to help those on the Waiting List.

Jim Nicholson was asked about the number of people removed from the Waiting List due to “emergency” situations. He said that in the past two years there have been about 171 added to DDSD services due to custody being given to the state and to the state guardian program.

Jim also reported on the survey that was sent out to families and individuals on the waiting list. The main thing he said that was discovered was that families feel isolated after they put their application in to be put on the Waiting List. Some don’t even know if they are still on the list years afterwards because there is no interaction between DDSD and those on the Waiting List.

Diana McCalment, Depew, OK – Mother of David, Homeward Bound Class Member

Diana spoke to the families about the importance of telling their stories. It was discussed that there has been comments from Oklahoma legislators regarding the fact they felt like they don’t hear from the families on the Waiting List. Diana told a story about a bill that passed not because it had a majority of people for it, but rather that legislators had received a few calls. She told of a story where one legislator said that he had seven calls that caused him to change his vote. She stressed to the families to tell your story!  She said there was information at the Partners in Policymaking website that can help families tell your story. http://www.partnersinpolicymaking.com/makingyourcase/

There was conversation once again about the state personal care program. We were told that this program is for anyone with a Soonercare active case. There is an approval process which does have a needs assessment and maybe an income qualification. Also, it is not designed for very young children.

A mother who attended for the first time asked about the  difference between a “state slot” and a “DDSD slot” at residential group homes. This mom had been trying to get her 26years old daughter into a group home but was told they only had slots available for those on the DDSD Waiver. Her daughter is on the Waiting list. She learned there are some slots that can be filled by someone in need that is not on the waiver program, but those spots are all filled. She asked if she could take a DDSD slot and pay the difference so that her daughter could still move it. It was explained that it’s not legal to do that. She expressed her frustration at trying to meet her daughter’s needs while being a single parent, where there is such a long waiting list with no hope of it moving.

There was also a family there who has an adult son with significant disabilities and they are trying to find an adult day program they can afford while their son waits. They report there is no such program that can handle is unique support needs, so one parent has to stay home with their son all the time.

the next meeting is scheduled for Thursday, June 9th at 2:00