Notes From June 9, 2011 DDSD Waiting List Meeting

32 in attendance

Represented in attendance:

14 – Parent or Family member

5 – Self advocates (individuals with developmental disabilities)

4 – OKDHS/DDSD

1 – Oklahoma Health Care Authority

1 – Oklahoma Office of Disability Concerns

4 – Agencies supporting those with developmental disabilities in Oklahoma

2 – Oklahoma House of Representatives

1 – Oklahoma State Senate

6 First time attendees (2 – Waiting, 2 – legislature & 2 – agency)

Locations represented – Norman, Oklahoma City, Noble, Anadarko, Owasso, Edmond, Morrison, Jenks, Stillwater, Pawnee, Depew, Marlow

Agency/Organizations represented: Oklahoma SoonerSUCCESS, Oklahoma SibShops,  Oklahoma Family Network, Oklahoma Autism Network, Oklahoma People First, APEX, Center for Learning and Leadership/UCEDD @ OUHSC.

• Status of the Waiting List – Jim Nicholson

As of May 16, 2011 there are 6,170 on the Waiting List

Waiting Time: (as of 5/15/2011) 6,100

Breakdown of Waiting List as of 4/15/2011

Waiting List Breakdown by county

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

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.

Mr. Nicholson also discussed that the two state run resources centers (NORC & SORC) had about a 25% reduction in staff due to the voluntary buy for those wanting to retire. He also discussed that DHS/DDSD is in the process of going through a renewal with CMS (Centers for Medicare and Medicaid) for two of their waivers. CMS has a requirement for states who do receive funds for waiver services, that they will “maintenance of effort”. That maintenance of effort can be viewed as “proof” that the state will maintain or increase services/spending for the population receiving waiver services. Because of the current financial climate and the two years of stimulus funds coming to the state, it could look like Oklahoma has not maintained the same financial obligation as it did two years ago. DDSD is working with CMS to make aware how they have continued services as it was two years ago, programs have not been cut, rates have not been reduced and those receiving services are still receiving services.

Jim had also gave a brief history of the Medicaid Waiver and eligibility process and where it started. He said that when the original waiver came to Oklahoma, everyone who was eligible for the Community Waiver were at that time living in a group home or ICF/MR. So that was the criteria for eligibility. At that time, some of the “beds” were covered under the waiver and the rest were covered by “state only” slots. As the waiver program increased, the majority of beds moved to ‘waiver’ slots, with fewer covered by ‘state only’ slots. There was conversation around why are there “waiver” slot openings at group homes or private ICF/MR’s and no one was using them. Mr. Nicholson explained that currently there is no one receiving waiver services in that area interested in receiving services in that ‘slot’. He also went on to say, that as the waiting list starts to move, when it starts to move, that those ‘slots’ may continue to stay vacant because the person at the top of the list may live in a completely different area that that opening and the first in line from that specific area may be 1/3 of the way down the list. There is a need and requirement to maintain the integrity of the waiting list.

• Explanation of the Waiting List breakdown – Marie Moore, DDSD Programs Administrator

Marie came to explain how and where DDSD gets the information of those on the Waiting List.  She explained by using the current OKDHS system they are able to reconcile the names on the waiting list with those in the system who are currently receiving services, such as SoonerCare, TEFRA, State shelter workshop, community integrated employment, adult day services, etc. through the state. The list of services provided is as current as OKDHS’ system. The list of “no services” can be account for those families whose income is greater than the SSI or SoonerCare requirement.  Also, for adults receiving “no services” could be due to SSDI from an aging or deceases parent. Again, Marie noted that this breakdown of services received is as current as the date provided.

• Additional Information from the Waiting List Survey – Jim Nicholson

Mr. Nicholson commented about the waiting list survey. He said they are continuing to pull out information from that survey. One piece of interested information received from the survey was that about 25% of those answering the survey are considered low income and 15% are considered below poverty level. A question from the survey asked the families if they felt that $250 a month would benefit them to buy the needed supports for their loved ones. More than 50% answered ‘yes’ to that question.

He also said that DDSD is currently working to send out letters to all those on the DDSD Waiting List to confirm continued interest in staying on the Waiting List and will add information about Oklahoma’s Respite voucher program and how apply. The letters are ready to go out, they just need to confirm that OASIS can hand the call load if the letters generate a lot of activity.

Something else mentioned by Jim Nicholson was that for the first time the Family Support Subsidy Payment program has a Waiting List. That is a direct reflection of the current financial situation the state is experiencing.

• Family Questions & Comments

During the comment and question section, one mother who was there with her two adult daughters, one with developmental disabilities discussed an issue with the services that are available once the person is off the Waiting list. Her daughter is receiving waiver services but the services are being cut. She explained that she was told by a case manager with DDSD that the HTS hours will be cut next year to 5 hours a day. This concerns this mom to think that she will be forced to place her daughter out of her home, which is not what she wants.

Another mom there with her teenage daughter with disabilities, comment that every summer she has to quit her job because she can’t find day care or assistance through the summer.

One parent asked what is the status of the “mini” waiver to help those on the Waiting List? She said it had been mentioned at a previous Waiting list Meeting. Mr. Nicholson said that they are still considering all options, but know that currently there is no new money to support any such idea.

Another person asked the DDSD Director if he felt the Waiting list was discriminatory, and Mr. Nicholson said “no” because when funds are available they offer services in a chronological order of application date. There is no preference or needs or personal request that can change the order of those being moved off the waiting list.  Someone else asked if other states have Waiting List for DDSD services. Someone spoke up and said that the majority of states have a waiting list.

The next Waiting List Meeting is scheduled for September 8, 2011 at 2:00