NOTES

DHS / DDSD Waiting List Meeting – Tulsa

December 9, 2011

6401 WAITING

61 in attendance

Represented in attendance:

28 – Parent or Family member

6 – House of Representatives

2 – Oklahoma Senate

4 – Self advocates (individuals with developmental disabilities)

7 – OKDHS/DDSD

1 – OKDHS Commission

1 – Oklahoma Health Care Authority

11 – Agencies supporting those with developmental disabilities in Oklahoma

1 – News Media

First time attendees – 40

Representing someone on the Waiting List – 25

Locations represented – Norman, Oklahoma City, Edmond, Tulsa, Pryor, Ardmore, Wagoner, Broken Arrow, Stillwater, Depew, Stone Bluff, Sapulpa, Sand Springs, Owasso, Chouteau, Jenks, Bixby, and Coweta.

Agency/Organizations represented: Oklahoma SoonerSUCCESS, Oklahoma SibShops, Center for Learning and Leadership/UCEDD @ OUHSC, Oklahoma Partners in Policymaking, Down Syndrome Association of Tulsa, Oklahoma Early Foundations. Tulsa World, ResCare, Tulsa Public Schools, TARC, Creek Nation, Central Tech, Oklahoma Parent Center, Community Service Council, Gatesway Foundation, ABCD3 Grant w/ the Child Study Center at OUHSC.

 

1. A few words for those Waiting –  Director Howard Hendrick spoke a little bit about the upcoming budget year and the anticipation that the funds will still not be at a level needed to do all that is needed. He explained that due to the stimulus money handed down a few years back, our state is still behind in needed appropriation to meet the amount we had before the recession. He spoke of optimistic caution when looking toward the anticipated budge for the next fiscal year.

2. Status of the Waiting List – Jim Nicholson presented a short PowerPoint presentation on the Waiting List Survey results. To access the PowerPoint click here.

Waiting List Survey points worthy of notice:

• Age of caregiver
  • Individual waiting under 18 years of age – caregiver average age is 42 (range 23-75)
  • Individuals waiting over 18 years old – caregiver average age is 55 (range 27-86)
  • There are 82 primary caregivers who were 65 years old or older
• Daily Living Skills (training in dressing, bathing, eating, grooming, ambulation, money management, shopping, meal preparation, etc.)
  • 92.6% of those waiting under the age of 18 reported needing assistance with daily living skills
  • 79% of those waiting over age of 18 report needing assistance with daily living skills
• Case Management Services were the highest reported need from both age groups
• Household income levels of those waiting
  • 52% of those waiting reported their household income at or below $30,000
    • Under 18 – 55.9%
      • 18 years and over – 48.6%
  • 27.6% of those waiting reported their household income was at or below $15,000
    • Under 18 – 27.7%
    • 18 years and over – 27.6%
  • When asked “would a $250 monthly subsidy meet the needs of the applicant and/or the family?” the response was:
    • Yes – 52.2%
      • Under 18 – 50.5%
      • 18 years and over – 53.8%
    • No – 23.5%
      • Under 18 – 27.5%
      • 18 years and over – 19.5%

Jim Nicholson also reported that he would like to see any of the left over funds in DDSD budget due to natural attrition of individuals receiving waiver services, to be used on addressing the Waiting List. He reports that in the past any funds “left over” have been used to support “emergency” cases, which may or may not have been on the Waiting list. When individuals are taken into state custody and need disability services those are the cases that absorb the leftover funds. In order for OKDHS to be able to support the individuals who go into state custody and need disability services, Mr. Nicholson would like the legislature to allow in the coming year’s budget funds to cover the emergency so that the funds left in DDSD would be used for those Waiting.

Someone asked Mr. Nicholson whether or not there was a waiting list for the Family Support Subsidy Payment Program, which is the $250 monthly stipend for families who have a child with a developmental disability and have a combined family income yearly of $45,000 or less. Mr. Nicholson reported there is a waiting list for those requesting the Family Support Assistance payment program. Because the funds that support the Family Support Subsidy Payment Program comes through TANF, it is not under his division.

Another question was asked about whether or not there is a waiting list for TEFRA (Tex Equity Fiscal Responsibility Act). This question was addressed by Sue Robertson from the Oklahoma Health Care Authority. Ms. Robertson reports there is NOT a waiting list, but there is an application process and approval process which does take some time for a final decision to be made.

Date of next application is April 28, 2004

Wanda Felty explained the “Waiting List Breakdown” sheet which was distributed at the meeting. It was explained that this sheet can tell you a lot about the people on the Waiting List. As of November 18, 2011 there was 6401 Waiting! As of Sept. 30^th, there were 206 aging Oklahomans waiting. Aging is considered anyone above the age of 55 years. Additionally, there are 1,098 individuals who have been on the waiting list for over 6 years. On the table listed “Services Provided” there are 1,021 individuals receiving the Family Support Subsidy (FSS) which is the $250 cash subsidy for families who have children with developmental disabilities and NOT receiving a waiver services. In order for a family to qualify for this service the combined income cannot exceed $45,000 a year regardless of the number in the household. Additionally, the subsidy is only for children under 18 years of age.  Another point mentioned about the “Services Provided” table is the TEFRA column. It shows there are 193 children on TEFRA. It was explained that TEFRA is a program which only looks at the child’s income but is limited to individuals with the highest medical needs. Also, that program ends when the child turns 19 years old. To see the “Waiting List Breakdown” sheet clickhere.

Lastly, Wanda presented the breakdown of those waiting by county. She explained to the legislators in attendance that they can see how many individuals in their area are on the waiting list and how long they have been waiting.  To see the “Waiting List Breakdown by county” click here.

  3. Family Questions, Comment and suggestions: (Families used this time to talk about their situation while their loved one is waiting for DDSD services.)

One mom reported that after her son graduated from high school at 18 years old, she had no one to care for him during the day, and there were no day programs in her area, so she was forced to quit her job and stay home. She reported that her family went from a relatively higher income family to now barely being able to get by from month to month. This mom also said she wants her son to live at home, so this is what she must do until his name comes to the top of the list.

Another mom reported that she had to remove her teenage daughter from school because she almost died. This mom has a graduate degree and is working on her PhD at this time. She acknowledge that due to her having to take care of her daughter at home while the school is trained on how to keep her daughter safe while at school, she is not able to work. She has had to reply on other state assistance during this time.  She also stressed if her daughter was receiving DDSD services that she would be able to go back to work, complete her PhD and improve the quality of her family’s life. This is a single mom, too.

One mom who was there with her husband, 12 year old daughter, who has disabilities and her younger son, said that her family is middle class, middle income but does not qualify for any of the other state programs which could assist with the cost of supplies or equipment for her daughter. This family has medical insurance through an employer and they have requested a bath chair to assist with bathing. The insurance company continues to deny and the family does not have the resources need to pay for this type equipment. Additionally, this mom mentioned the cost of incontinence supplies (diapers or adult brief type and wipes) that her daughter needs which are not covered by insurance or any program other than DDSD and SSI-DCP. Once her daughter reaches the top of the waiting list she will be able to have the cost of the incontinence supplies covered by the waiver, which will be a huge financial relief for the family.

Another family mentioned that while they may qualify for some programs (SSI-DCP, Family Support Subsidy Payment Program) while their child is on the waiting list, trying to navigate the system to get the assistance their child needs, is virtually impossible. *** this is supported by the Waiting List survey which showed that case management was a high need stated by the parents ***

One family mentioned that diapers are very expensive especially the size needed for individuals who are not in the infant and toddler size and are difficult to find. She stated “You can’t just run to Walmart and picked them up.”

Wanda Felty had used this time to add that she is hoping and praying there is time when our state’s financial situation turns around, that Oklahoma considers adding incontinence supplies to the State Medicaid Plan which would allow these supplies to be purchased through Oklahoma SoonerCare. She mentioned that there are other states that have incontinence supplies in their state plan, too.

There was a dad who spoke about his frustration that the school doesn’t seem to be offering the needed related services that his son needs. He would like to see the school carry their load when it comes to therapies, such as occupational, physical or speech language.

There was another dad in attendance who thought that if the state would end “food stamp” abuse, that would free up money to support the waiting list. It was explained to him by Director Hendrick that food stamp fraud is a continue concern with our state and that OKDHS has an investigation section just for looking into and reducing such abuse. Mr. Hendrick told the gentleman that if he speak to him after the meeting, he would get the details of abuse the man knew was out there, then he would have it investigated by that division. The other issue Mr. Hendrick explained to all in attendance is that the funds that supply the food stamp benefits is not the same that supplies the DDSD Waivers and that he would not be able to transfer money between the two programs.

Legislator’s comments during the meeting:

There were several legislators in attendance. One professional/parent asked how do “we” get the legislators to give funds to serve the waiting list, as they did several years ago. A Senator stood and explained that during these tough fiscal times, everyone feels their need is greater than the next asking the same questions. This senator said it was very doubtful that there would be any extra funds this year to offer assistance to those on the waiting list. It was also said that there are many programs out there who feel their program is as or more important than the next, and this is what the legislators are presented during each session.

Later a Representative stood and talked a little more about how he felt the legislature could impact the waiting list. He explained that if they took a little money from each program out there, they would have enough in one session to affect the waiting list.

It was explained and strongly urged to the families to go meeting their representative and senator while the legislation is not in session. When visiting the legislators the family needs to explain to them about their family and their family member who has a disability. Educate each of the legislators about the waiting list and how those services, once received could improve their family and their loved one. Several of the legislators expressed their desire to help, they just had no idea of the magnitude of the waiting list and the difficulties of the families.

Wanda suggested since the next Waiting List Meeting in Oklahoma City while the Legislature is in session, that families make an appointment to visit while they are in town and to be sure to invite each of them to the Waiting List Meeting. If a family is in town and would like to go to the Capitol, Wanda offered to go with them to help them navigate on their first trip.

 

*** Special thanks to Lisa Debolt, Elaine Stageberg, Lori Wathen and Diana McClalment for assisting with the notes from this meeting.***

1. Next Meeting

 March 22, 2012 at 1:30PM

Sequoyah Memorial Office Building C-47

Capitol Complex – Oklahoma City, OK