January 14, 2009 Meeting Notes



            Represented in attendance:


2 – OHCA (Oklahoma Health Care Authority)

1 – House of Representatives

12 – Parent, Family member or Self advocate

2 – Agency & Student


(6 – First time attendees)


Agency/Organizations represented in attendance: Oklahoma Infant Transition Program, OASIS, Oklahoma Family Network, Systems of Care, Oklahoma LEND, APEX, Inc and Muscogee (Creek) Nation


     Status of the Waiting List – Jim Nicholson

As of the end of Fiscal Year 2009 first quarter

            4,243 Waiting for services

            297 added during the first quarter

            27 began receiving The In-Home Supports Waiver

            44 began receiving Community Waiver

            43 applications closed (not added to the waiver)


            Waiting Time Reported:

>3 years – 1,148 = 27.05%

2 – 3 years – 946 = 22.3%

1 – 2 years – 1,077 = 25.38%

<1 year – 1,072 = 25.27%


It was reported that funding was virtually stopped 12 – 18 months ago for individuals on the waiting list.  There was a one time fund available at the end of last year’s legislative term.  That allowed about 80 individuals to come off the waiting list.  There didn’t seem to be much hope for funding to support those waiting on the list.  The expected funding shortfall for all state agencies seems to have caused the lack of hope. 


One person brought up the need for the Self Directive Services (SDS) option to the Waiver programs to move forward.  Mr. Nicholson gave a brief update on the Self Directive Services.  He said the Oklahoma Health Care Authority (OHCA) and DDSD had a conference call with CMS (Centers for Medicare and Medicaid) and they feel like they have ironed out all the concerns CMS has regarding SDS. OHCA has send the needed information back to CMS and are awaiting the decision.  It was also explained that the idea behind SDS is to allow families or individuals to eliminate the agency if they desire.  This would allow for an increase pay to the direct care staff, and could potentially increase the amount of support a budget would be able to provide.  It was also discussed by a family member that when this is finally moved to those on the Community Waiver that it could be a cost savings to the state and not decrease the support already provided to the individual.  One family said they already do the job search and virtually the hiring and firing of the direct care staff, and self direction would allow for an increase in hour wages for the staff. 


      Update on TEFRA – Sue Robertson or Debbie Harmon (Oklahoma Health Care Authority)

TEFRA (Tax Equity and Fiscal Responsibility Act) is an option for families who’s income is too high to qualify for the state Medicaid (SoonerCare) program.  TEFRA does not look at the families income but only the child’s.  There is a level of care requirement along with cost qualification.  It was reported by Ms. Harmon, that if the cost for the child to stay at home exceeds the cost for the level of care at the respective institution, the child may not qualify under that criteria.  Ms. Harmon reported that 267 children are now receiving SoonerCare under the TEFRA program.  OHCA added 98 children in the past year.  For more information follow this link: http://www.okhca.org/individuals.aspx?id=172&menu=42&column=true&part1=554&part2=550&part3=552

It was requested to DHS/DDSD to send out notices to all person’s on the waiting list under the age of 18 information regarding TEFRA and information about where to apply.


     Family Questions & Comments

Some discussion from families:  there was some conversation regarding the Family Support Assistance Payment (FSAP) program, which offers to families a check for about $250.00 a month who has a child under 18 with a developmental disability and who are not receiving DDSD Waiver supports.  Additionally, there is a Respite Voucher Program which offers respite vouchers to families who are not receiving FSAP or the waiver program vouchers in the amount of $400.00 every quarter.  The income limit for families on the FSAP is $45,000 a year and the limit for the Respite Voucher program is $60,000.  This seems to exclude a number of families who are working middle class.  It was discussed that the income limits might need to be recalculated to better match today’s income levels.  It was also proposed that the families possibly be given some of both and not limit it to one.

Family Support Assistance Program: http://www.okdhs.org/programsandservices/dd/commsvcs/famsupp/default.htm

Respite Vouch Program: http://oasis.ouhsc.edu/voucher.htm


There was also some discussion regarding the waiting list and the process of adding individuals to the waivers.  One family proposed consideration for a “tier” system in regards to needs.  The example was given if an individual high on the list only needs limited supports, but someone way down on the list is in high need of support, there might need to be a better system of determining needs. 


There was some discussion around the possibility of looking at income and the ability to pay for some supports or even possibly a co-pay system for those with higher income.  The example was given, since the Waiver Programs only considers the individuals income and the income of the family, a family could potentially have an income of a million dollars and the individual receive the same services as a person whose family income is in the poverty level.  Additionally, it was mentioned that considering families income to determine addition to the Waiver Programs might be considered.  If a family can pay for and is currently paying for a service, then this might need to be considered. 

(editor’s note: While I feel we are approaching a potential financial crisis in our state, looking at ways to improve supports for individuals with disabilities is a priority, we need to consider all aspects before our state jumps on a change without looking at all consequences.  I respect the fact we must improve our system, I want to make sure we don’t jump without complete family involvement and input.)


One family brought up the issue of the absence of day care for those individuals between the age of 12 and 21.  For families who continue to work and support their child with a disability finding qualified people care for their child during working hours is nearly impossible.  One family spoke about that on most given days her son is moved from one home to another program, to another home to “patch work” care in order for her to continue to work.  There was some discussion on the idea that possibly schools could receive DHS child care supplement to support an after school program for this population of students.


     Schedule Next Meeting  Notice change in meeting room

April 29, 2009


1:00 PM

Sequoyah Memorial Office Building

4th Floor South Conference Room