April 30, 2008 Meeting Notes

Notes from the Waiting List Meeting

April 30, 2008

1:30 pm


Represented in attendance:


3 – OHCA (Oklahoma Health Care Authority)

30 – Parent, Family member or Self advocate

2 – Agencies (SoonerSUCCESS, Phoenix Provider Agency – Tulsa)


(Agencies/Organizations represented by family member in attendance – Oklahoma Family Network, Center for Learning and Leadership/OU Health Science Center, OASIS, Oklahoma Family Support 360’ Center, Down Syndrome Society of Central Oklahoma, Oklahoma Infant Transition Program)


In attendance we had:

11 families/individuals on the DDSD Waiting List

18 families received DDSD services

Area’s represented by attenance:






El Reno

Midwest City




Oklahoma City

Status of the Waiting List – There are about 3,854 currently on the Waiting List. Jim Nicholson explained that the budget is at a “stand still”.  The Waiting List is not being worked and has not been worked in several months*.  There is no expectation for improvement because the budget for fiscal year 2009 approved by the Governor has the same amount of funding for DDSD as last year.


He was asked to explain why the waiting list will not be reduced once the fiscal year budget starts. He explained that due to the “federal match” being reduced and the budget from the state not being increased, OKDHS will have a significant loss in available funds.  Additionally, Jim Nicholson explained that the federal agency (CMS) which oversees the Medicaid and Medicare payments to each state had a policy change regarding how states can bill for and be paid for “targeted case management”.  This change in policy could have a financial impact to OKDHS estimated at 24 million dollars.  If this happens, this could be a huge issue in our ability to provide DDSD services to those on the Waiting List.  Jim Nicholson did reassure families that there is NO waiting list for families applying for the Family Support Payment which is funded through TANF dollars. 


There were several family members who were aware of the CMS policy change and explained that there is a legislation** currently approved in Congress but having issues in the Senate that would put a moratorium to “hold” this change in policy. 


Status of Self Directed Services – Jim Nicholson explained that Self Directed Services (SDS) is in the process of being added (amended) to the In-Home Supports Waiver, child and adult.  The Oklahoma Health Care Authority is currently making final adjustments before sending it to CMS (Centers for Medicare/Medicaid) for final approval.  It was explained that once CMS receives the request to amend the current waivers they will have 90 days to make a decision.  It was also explained that CMS can “freeze” that timeline if they need more information from Oklahoma to make a decision. 


TEFRA – Debbie Harmon, LPN from the Oklahoma Health Care Authority was present to explain TEFRA.  TEFRA*** (Tax Equity and Fiscal Responsibility Act) began in October 2005.  It provides Medicaid eligibility for children with high health care needs.  This program does not look at the family’s income, but rather only the child’s income.  Additionally, the child must meet one of three “high” levels of care qualifications to be eligible. Several families at the meeting have children that are difficult to test to obtain an IQ score but are known to have intellectual/cognitive disabilities.  Debbie Harmon explained that for the children who cannot have an IQ test performed and a doctor is not able to give an “estimated” IQ score; there are several ways a child can be evaluated.  She also explained that to qualify under the ICF/MR level of care the child must be “functioning” at least 50% lower than his/her chronological age.  For example, if a child is 8 years old and has an IQ above 70, they must be “functioning” at less than a 4 year-old level in order for the child to qualify for TEFRA under the ICF/MR level of care.  (This was a very technical section and it’s very difficult for me to put into words.  Please if you have any questions feel free to contact Wanda Felty)


Family Question & Comments: One family member discussed the change in her support staff due to them getting older.  She wanted to express her concern that the new staff she has to hire come through an agency as opposed to the staff she currently has which have a direct contract with Medicaid.  Utilizing an agency reduces the hours she can have staff due to the overhead of the agency.  It was explained to her that the federal agency (CMS) that oversees payments will not approve that program any longer.  Several families explained to her that Self Direction would be a similar program, but her children are both on the Home and Community Based Waiver, which will not have SDS at this time.


Another family discussed her issues with county DHS officials who are not familiar with different programs or policy.  She was told by her local office that families on the Waiting List cannot qualify for the Respite Voucher Program.  It was explained to her that people receiving any waiver service cannot qualify but those ‘waiting” can and should apply by calling OASIS 1.888.771.4550 local 271-4550.


Schedule Next Meeting – Wednesday, July 30, 2008 at 1:30 pm.



*According to OKDHS.org the waiting list is stalled working applications at or about April 7, 2004.

**H.R. 5613 – Protecting the Medicaid Safety Net Act of 2008

***More information at www.okhca.org TEFRA