September 2, 2010 Meeting Notes



September 2, 2010

52 attended the meeting

Represented in attendance:


2 – OHCA (Oklahoma Health Care Authority)

31 – Parent, Family member or Self advocate

9 – Agency

1 – Oklahoma House of Representatives

2 – Oklahoma Senate


22 First time attendees (11 – Waiting for DDSD Services, 2 – Receiving DDSD Services & 9 Concerned Oklahomans)

Locations represented – Norman, Poteau, Tulsa, Edmond, Yukon, Pryor, Owasso, Jenks, Oklahoma City, Mustang, Piedmont, Noble, Duncan, & Depew.

Agency/Organizations represented by attendees: Center for Learning & Leadership/UCEDD, Oklahoma Infant Transition Program, Oklahoma Family Support 360’ Program, Apex, Duncan Group Homes, OUHSC Early Foundations, Oklahoma SoonerSUCCESS, Oklahoma SibShops, Oklahoma Family Network, OASIS, OUHSC Child Study Center, Oklahoma People First, Oklahoma Commission on Children and Youth, Oklahoma Community Providers, Inc., & Channel 9 News.

Status of the Waiting List – Jim Nicholson

Learn more about the Waiting List.

How many are in your county WAITING?

     The Waiting List has not moved or been “looked” at in over 2 years. The people requesting assistance through DDSD is growing at a rate of about 1,000 per year. As of July 2010 there are 5,737 Oklahoman’s WAITING for assistance from DDSD. In Fiscal year 2009 there was 1,049 added to the Waiting List.

Some interesting statistics of the Waiting List:

We have to people who are 80 years old, Waiting. There is one 77 year old and one 76 years old, Waiting. Then we have 32 people between the age of 65 to 74, waiting and 142 between the age of 56 and 64, Waiting.

For those who are out of school, from 19 years of age and older, there are 3,536, and of those, 2,350 live at home with their parents or with a family member.

While some individuals have “some kind of assistance”, either SSI, SoonerCare, or the Family Support Assistance Payment program, there are 1,316 who have NO assistance.

Explain idea presented to legislative panel for those on the Waiting List – Jim Nicholson

Mr. Nicholson explained that he had presented his idea to a legislative panel at SORC (Southern Oklahoma Resource Center) last month. His idea is to create a “Second Waiver” which he referred to as “Support Waiver 2”. It would be divided by age as the current In-Home Supports Waiver is. The Children’s 2 Waiver – would be capped at $3,000 a year to offer assistance with respite, after school care and/or incontinence supplies. The Adult 2 Waiver – would be capped at $7,000 a year to offer day or employment program and possibly some incontinence supplies as well. He estimated the cost to the state to support those on the Waiting List would be about 9.8 million of state dollars with the full waiver 2 coming to 27.9 million with the federal match.  It was reported by someone from DDSD that our state is ranked at #2 in the nation at getting individuals with developmental disabilities into the work force.

TEFRA  – Debbie Harmon, OHCA

Currently, there are 365 children receiving SoonerCare through the TEFRA program. Debbie explained that TEFRA (Tax Equity and Fiscal Responsibility Act) is a program for children under 19 years of age, to qualify for SoonerCare (Medicaid). Typically the parent’s income would be considered for qualifications into the regular SoonerCare program. With TEFRA, only the child’s income is considered, and then child must meet an institutional level of care. Debbie explained there are three different institutional levels of care; 1, Hospital, 2) Nursing Facility, and 3) ICF/MR.  Each level of care also has a cost per day outlined for that care. If the child’s care exceeds the cost per day for the institution, then child may not qualify for TEFRA. She went on to explain that the ICF/MR level of care is specific to a diagnosis of Intellectual Disability (Mental Retardation). For those children under the age of 4, she said she would accept the evaluation from Sooner Start. Also, she did say the child must “function” at half their chronological age to qualify. The example given was if you had a 12 year old, who has a MR diagnoses, the child would still have to “function” at a 6 years of age or lower. Also, the child must be living at home, and not be in the hospital to qualify.

Debbie said that there needs to be more of an outreach to help Oklahoman’s to be aware of TEFRA. If a person is interested in applying for TEFRA they will need to go to their local country DHS office and ask for an application.

Debbie also said the Health Care Authority has a new waiver called the Medically Fragile Waiver. It is expected this waiver will cover those children who have high medical needs that age out of TEFRA.

There were many questions about whether a specific services or program would be covered by TEFRA SoonerCare, and Ms. Harmon said she couldn’t answer those questions.  They would need to be answered by OHCA Care Management.

Family Questions & Comments:

  • First was a family who attended the last Waiting List Meeting. At the last meeting, the grandfather learned about a program which could offer a little help to his grandson and his daughter. It was reported the group that this family learned of this program and the process has begun to verify qualifications. This family is very excited about the thought that mom will get some kind of assistance for her son and will then get a break, too.

State Personal Care Assistance Program is offered to those who receiving SoonerCare that qualify.  I’m told there is an income qualification and then a “needs” qualification. The way I understand the “needs qualification” is if the person is old enough that individuals of the same age are able to do their own personal care. Personal care is what happens in the restroom, such as toileting and bathing.  So if the individual can take themselves to the restroom and do the “paper work” with no assistance, they may not qualify for Personal Care. Also, if the individual cannot prepare their meals, or do their own laundry, they may qualify for the State Personal Care Assistance Program.  If a person is interested in this program they can apply at their local OKDHS office.


  • There is a family in Wister (Eastern Oklahoma) who e-mailed their situation in to have it shared with the group. Nathan is 19 years old, is on the Waiting List and has been out of school for a while. Nathan has someone come into the home and watch him during the day so his parents can work. He uses incontinence supplies (diapers) and also has to have his diet supplemented due to the fact he can’t consume enough to keep him healthy. Even with Nathan’s SSI, he doesn’t have enough to cover all his needs. This family would like to see assistance for a day program and help with incontinence supplies.
  • There was a mom from Poteau and Grandmother from Tulsa who came to share their son’s situation. Her son is 17 years old, a senior in high school and has been on the Waiting List for more than 6 years.  Her son will loose his Family Support Assistance Payment when he turns 18 and will also lose the incontinence supplies at that same time too. This is a singe mom, and she will lose her child support once he graduates from high school. Her son’s health has also change and now has to be catheterized every 3 – 4 hours. Mom is emotionally drained. Grandmother is concerned for the whole family. There were several ideas given to this  mom to help her plan for employment support once her son graduates. She was given the phone number of a contact who could help her see if any of the options are available in her area. As mom pointed out, transportation is an issue, since her son uses a wheelchair, too.
  • A dad from Noble came to talk about his adult son who graduated from high school. The only option he has is a “day care” for adult with disabilities, which they have to pay for out of pocket. The payment exceeds his SSI payments, so the family has to absorb the remaining cost. The issue this dad wanted to bring up was that his son is very social and wants a job. He wants to get out and earn an income, but can’t do it without support. This young man has cerebral palsy and a seizure disorder. He uses a wheelchair and will need assistance to work. The dad described the daycare as the same program his young toddlers attended years ago. He feels his son is just sitting there doing nothing and especially not interacting with his community and earning an income.
  • There was  a mom who came with her young daughter. She wanted to share the situation they are currently battling, and it’s over large diapers. This young girl wears diapers and no one in our state carries the size she needs. This family is required to order out of state and pay for them out of their own pocket. She has been on the waiting list for several years and is need of incontinence supplies and some assistance after school or on the weekend to give the family a respite.
  • There was a mother and father who came with their two years son who has Down syndrome. Their son has been on the waiting list from shortly after he was born. The family knew of the extremely long waiting time, so they applied earlier than he could qualify. He still is expecting a more than 5 year waiting period.
  • A mom and her young adult daughter traveled from rural Oklahoma to share their story of need for assistance. This family needs personal support so mom can work. She is concerned because she lives in a very low populated area that she may never get support or assistance.
  • A mom from Mustang came to share her situation with her daughter with sever disabilities. She uses a wheelchair and needs 24 hour assistance. They have been on the Waiting List for 5 years or so.
  • A dad came to share the story of his triples that all have Autism. One of the triples as multiple disabilities, and there is an older sibling in the home as well. They have been on the waiting list for about 5 years.

Schedule next meeting:

Wednesday December 8, 2010 1:30 pm