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December 18, 2012 Meeting Notes

NOTES

OKDHS / DDSD Waiting List Meeting
Tulsa
Thursday – December 18, 2012
1:30 PM

7040

Working application date: August 2004

66 in attendance

Represented in attendance:

41 – Parent or Family Member

5 – Self-Advocate (person with a disability)

6 – OKDHS/DDSD

2 – Oklahoma House of Representatives

12 – Agencies supporting those with developmental disabilities in Oklahoma

45 – First time attendees

Representing someone on the Waiting List – 34

Locations represented – Norman, Tulsa, Owasso, Claremore, Broken Arrow, Sapulpa, Sand Springs, Oklahoma City, Jenks, Bixby, Stillwater, Yale, Inola, Haskell, Chouteau, Depew, Pryor,

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC, Oklahoma SoonerSUCCESS, TARC, Eagles View, Inc., Volunteers of America, Ability Resources, Home Life

Introduction of OKDHS Director Ed Lake

Director Lake introduced himself to the group. He welcomed everyone and thanked them for coming. He said he has only been on the job 12 days, and he’s eager to learn more about the situation with families on the DDSD Waiting List

Waiting List Update – Jim Nicholson, DDSD Director and Wanda Felty, parent

Jim Nicholson reported they are no longer stuck on application date of April 24, 2004. They are working applications from August 2004. Because of the appropriations from SB 1979 during last legislative session, DDSD has been slowly working the waiting list. Mr. Nicholson went on to say that because of the amount of time individuals have been on the waiting list, more than eight years, it has been extremely difficult to find those at the top of the list. This was something not expected for the degree its taking. DDSD explained that they are taking their time and doing as much as possible to locate the individuals before they decide to close the application.

Mr. Nicholson reported that at the last OKDHS Commission meeting, the Commissioners voted to close both the state institutions, Northern Oklahoma Resource Center – Enid, and Southern Oklahoma Resource Center in Pauls Valley. In the Resolution presented by the Chair of the OKDHS Commission, Wes Lane, the Commission requested the Governor establish a “Blue Ribbon Panel” to look at how best to address the DDSD Waiting List and other services for those with developmental disabilities in Oklahoma. Mr. Nicholson hopes the Blue Ribbon Panel will look at cross agency collaboration and attempting to meet the needs of all individuals with developmental disabilities in Oklahoma.

A few days after the Commission voted to close the institutions, the people of Oklahoma voted to abolish the OKDHS Commission and turn over oversight to the Governor. With this vote to abolish the Commission, a bill passed in last legislative session, created the establishment of four Citizen Advisory Committees, Aging Services, Children and Family Services, Administration and Developmental Disability Services. Each Advisory panel will have five members, with one member on each panel appointed by the Governor, the Speaker of the House, the Senate Pro Tempore, the Minority House Leader and the Minority Senate Leader. At this time no appointment has been made to the Developmental Disability Advisory Panel.

Someone asked Mr. Nicholson “What do families need to do?” Mr. Nicholson said to recommend to your legislator someone you feel needs to serve on the panels, or to testify about what is working or not working.

Someone asked about the $1 Million appropriation from last legislative session, how many applications have been processed and so forth. A DDSD staff reported that there are about 100 applications in pending/review, which means they are working through locating and processing those applications. She also reported that there is about 75% of the $1M left to serve the waiting list.

Prior to the $1 Million appropriation, Mr. Nicholson reported that there were 191 individuals added to waiver services but only 9 of those came off the waiting list. He explained that because of “emergency cases” coming through child welfare those individuals do not even have to be on the waiting list. He would like to see those serves paid for by the Child Welfare division and keep those funds to serve individuals from the waiting list.

Another question posed to Mr. Nicholson was “Is there any federal mandates of what Oklahoma should be doing as for as the waiting list?” Mr. Nicholson said he wasn’t aware but that each state was allowed to waiting list but was required to make substantial effort to address meeting those needs. He continued to say, a waiting list of more than six years is not look like “substantial effort”.

It was discussed that any person who has applied to DDSD services to contact their area office and make sure the information, address, phone number, etc. was current and up to date. JoAnne Goin, Area Supervisor from the Tulsa office, added that any of the area offices would be more than happy to look that up because in the long run it decreases the time when a person’s name comes to the top.

Jim also talked about the Waiting List survey that DDSD did a few years back. He is planning to do a follow up survey to those involved to see if they can get more information of what is truly needed of those waiting.

There was a question asked of Mr. Nicholson about is working the waiting list in order of application, is that the best way to do it?  Shouldn’t it be on needs?  Jim explained that the waiting list was set up as part of the legal action following the closure of Hissom and it was decided then it would be first come first served.

State Representative attending the meeting asked “Is it money that is needed?” and it was a pretty loud response from those attending “YES!” She verified that all those served off the waiting list would qualify for the Federal Medicaid match, and Mr. Nicholson responded with “Yes”.

A parent suggested that DDSD send out yearly postcards to those waiting to help keep contact information current and to keep DDSD connected to those families.

Wanda Felty reported on the DDSD Waiting List Breakdown


CountyBreakdown12-12

(Click image to enlarge)

Here is the “key” to the information on the sheet.

Pink – This represents the age that would typically be in school, K-12, noting that not many students remain in school after their 12th grade but by law they are allowed to stay until their 22nd birthday.

These children could need after school care because there are not many daycare programs in the state that are qualified or comfortable to take a child with a significant disability.

These children could also need summer support, assistance with medical co-pays, therapies that are not typically offered in the school.

Green – This represents those individuals who have graduated from high school and they may need a program to keep them safe, work on improving the skills they learned during school.

This population may have been in school and both parents work, but after graduation one parent had to give up working to stay home and support their child. This population also represents the age group who should be working on skills to obtain meaningful employment.

Yellow – This represents the group of individuals who are aging. They range in age of 56 years old all the way to 82 years old. The question was posed, how old are their caregivers?

The left side of the top box show the time each age group has been WAITING with a total in the middle. The right side of the top box shows what each one of age groups are receiving, or not receiving through the state. The key of each program is just below that box.  The box at the bottom right shows where each person on the waiting list is living as of the time of application, most likely.

DDSD Breakdown by County

Family Questions & Comments

One mom asked if there was a waiting list for the Community Waiver, and the answer was no. Individuals can move from the In-Home Supports Waiver to the Community Waiver if their needs meet that high level of services.

One mom said she was going to have to quit her job to care for her daughter because she is graduating from high school. She said she knew about DDSD and the waiting list but didn’t know there was no services after graduation to support her daughter so she can be safe while this mom works. She wishes now that she would have put her daughter on the waiting list much sooner.

One dad asked how to determine if his son was still on the waiting list. He was encouraged to call the DDSD area office to find out. He connected with Ms. Goin for more information after the meeting.

It was suggested that parents on the Waiting List be informed about Partners in Policymaking. (Link to Partners in Policymaking)

It was pointed out that on the DDSD Waiting List breakdown that is shows there are 22 people “incarcerated” on the waiting list. DDSD said they would look into that.

One more of a teenage daughter spoke about her daughter’s high level of needs to be safe and her inability to provide for her. Her daughter requires 24 hour direct visual supervision and she is very tired and exhausted. She pleaded for someone to please consider her situation and find some kind of help for her family and daughter.

Next Meeting

Thursday, March 21, 2013

Sequoyah Building – Oklahoma Capitol Complex

Room C-47 (Basement)

1:30 PM