September 27, 2012 Meeting Notes


OKDHS / DDSD Waiting List Meeting
Thursday – September 27, 2012
1:30 PM


Working application date: July 21, 2004

38 in attendance

Represented in attendance:

21 – Parent or Family Member

2 – Self-Advocate (person with a disability)


2 – Oklahoma Health Care Authority

1 – Governor’s Office

2 – Oklahoma House of Representatives

3 – Oklahoma Senate

3 – Agencies supporting those with developmental disabilities in Oklahoma


6 – First time attendees


Representing someone on the Waiting List – 17

Locations represented – Norman, Oklahoma City, Edmond, Stillwater, Midwest City, Guthrie, Noble, Oklahoma County/Forrest Park, Duncan

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC, Oklahoma People First, Oklahoma SoonerSUCCESS, Oklahoma Developmental Disabilities Council – Oklahoma Partners in Policymaking, Oklahoma Family Network, Oklahoma Autism Network, Oklahoma Disability Law Center and Oklahoma Foundation for the Disabled

Waiting List Update – Jim Nicholson, DDSD Director

Mr. Nicholson reported there are currently 6,958 on the DDSD waiting list as of September 24, 2012. He said the next application that will be assessed for services is from July 21, 2004. He reminded us that for more than four years Oklahoma was stuck on application date April 28, 2004. While it’s not a huge jump in working application, some movement is better than no movement.

Mr. Nicholson explained there were more than 100 individuals added to DDSD service but only 8 or 9 were actually from the Waiting List. He explained that most of those who began receiving DDSD waivered services where placed through either the Public Guardian program or the Child Welfare program once the state takes custody due to abuse or neglect. He was asked by a parent “So if the family works through their ‘program’ and receives the help they need to help them cope or whatever and they and their child are reunified, will the waiver services transfer with them. He said yes, and it would be based on need. Another parent observed out loud, “Sounds like a short cut around the waiting list”. Mr. Nicholson said it could appear that way.

Wanda Felty explained the two hand-outs, the DDSD Waiting List Breakdown (below) and the DDSD Breakdown according to county (link below).

(Click image to enlarge)

I explained the color coding on the first sheet and added explain for each population.

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 receving, 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.


The second sheet, DDSD Waiting List Breakdown by county and passed out as well. This is the current breakdown of those waiting according to counties. I suggested, after talking with a candidate who didn’t realize there were many individuals in his district on the waiting list, to share this with any legislator or candidate for state office. I explained that they don’t know what they don’t know. Help them understand that every county has someone on the Waiting List.


Update on funds appropriated through SB 1979 – Jim Nicholson, DDSD Director

Mr. Nicholson reported that DDSD is in the process of assessing individuals off the waiting list in order to use the $1 Million allocated through SB 1979. He explained that due to the length of time of the waiting list, the assessment process takes a little more time than it did in the past. Most individuals have to have a psychologically evaluation to determine they meet the MR diagnosis requirement. He said at this time they have only began fully serving about 12 individuals, but would be able to report more in time. It was also suggested after serving all the individuals possible with allotted money, report the number of individuals who desired to continue receiving the Family Support Subsidy check instead waiver services.

Mr. Nicholson explained that also in SB 1979 there was an appropriation for an increase of provider rates, for aging services and for disability services. That appropriation is expected to raise provider rates by $0.24 an hour. He continued by explaining the providers have not had a rate increase since 2006, but yet the minimum wage has increased three times during that time period.

Family Questions & Comments

Sen. Greg Treat asked to explain misinformation going around about the State Question 765. Sen. Treat wanted to dismiss the rumor that DHS would “go away”. He went on to explain that DHS would continue to operate as it always has, the oversight and operation would change from the authority of the DHS Commission to the director. He went on to explain that currently Oklahoma is the only state using a commission to operate human service departments. If state question does pass, the authority will be handed to the director and the hiring of the director will be place on the Governor. The state question is only about removing the authority of the commission to the director and the hiring of the director from the commission to the Governor. If state question 765 is passed by the vote of the people in November HB 3137 will become active. This bill creates four citizen advisory committees. The committees will have five appointees and will focus on specific areas of operation at DHS, aging, children and family, disability and administration. HB 3137 also defines how each of these committees will be appointed; the Governor, the Speak of the House, the Senate President Pro-Tem, the House minority, and the Senate minority.

There was questions from family members asking Sen. Treat how would we be assured that a family member would be on the disability citizen advisory committee. Sen. Treat said there was no specific requirement to have a family member on these committees but that could be changed later if there is reason to believe it is needed. The mom’s speaking both said it was needed.

*** Since the DDSD Waiting List Meeting, state question 765 did pass which means the DHS Commission has been dissolved. HB 3137 has now been placed into action. To read HB 3137 click here. ***

A mom from Oklahoma City spoke up and told about an issue she had experience while her son was on the waiting list. Her son’s medical condition caused him to have difficulty in consuming enough nutrition to stay healthy. The pediatrician prescribed her son to start on a liquid nutrition supplement, something like Pediasure. Since this is not a controlled supplement, and was not administered through a g-tube SoonerCare (OK Medicaid) would not pay for it. This is a single mom with a low income and she was not able to pay for it. Someone asked the DDSD staff if this child would have been on the waiver would the waiver have paid for this supplement? The staff said yes.

A dad from rural Oklahoma spoke about a situation his adult son has experienced over the past few months. His son is currently on SSI which allows him to be on SoonerCare (OK Medicaid) for adults. SoonerCare has a co-pay requirement for prescriptions and a limit to the number of prescriptions someone can get each month. This dad reported that his son had a change in medical conditions and the need for a change in medication. Because he had already filled the prescriptions for that specific month, his son was required to cover the full amount of the prescriptions. They were put in the situation to decide which medication they could afford or wait until the new month rolled around to allow SoonerCare to help supplement the cost. Additionally, this dad reported that each month his son is allowed six prescriptions covered by the SoonerCare co-pay program. This young man has almost 12 medications needed each month. This family is often challenged with deciding which medication he needs most, which is best for SoonerCare to cover and trying to decide which they can actually pay for. Someone asked the DDSD staff if this young man was on the waiver program would the prescriptions be covered? She reported yes, the waiver would cover the prescriptions and this young man would not be in this situation.

Next Meeting – TULSA
Tuesday, December 18, 2012 1:30 PM
Skyline East Building – 5th Floor Conference Room
6128 E. 38th
Tulsa, OK