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 click here.

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

Notes from September 8, 2011 Waiting List Meeting

27 in attendance

Represented in attendance:

11 – Parent or Family member

1 – Self advocates (individuals with developmental disabilities)

9 – OKDHS/DDSD

1 – Oklahoma Health Care Authority

5 – Agencies supporting those with developmental disabilities in Oklahoma

7 First time attendees

Locations represented – Norman, Oklahoma City, Noble, Yukon, Mustang, Guthrie and Depew

Agency/Organizations represented: Oklahoma SoonerSUCCESS, Oklahoma SibShops,   Oklahoma Autism Network, Oklahoma People First, Oklahoma Infant Transition program, Center for Learning and Leadership/UCEDD @ OUHSC, OASIS, Oklahoma Developmental Disability Council, Oklahoma Partners in Policymaking, Evergreen Community Services, Big Five Provider Agency, Today’s Therapy Solutions, Down Syndrome Association of Central Oklahoma, Oklahoma Early Foundations.

*** Before the meeting jumped into full swing it was announced that Mr. Raymond Haddock would be retiring from OKDHS at the end of September. He has served Oklahoma for 40 years. The help he has offered families who have loved ones waiting over the years may have seemed to receive little to no recognitions, but I can say, he has made a huge difference in so many lives. Mr. Raymond Haddock has been a huge supporter and friend to those individual on the waiting list and those receiving DDSD services. He will be missed!  Mr. Haddock, on behalf of the DDSD Waiting List Meeting and the hundreds of individuals you have touched, I say Thank you!  We wish you the best in your next adventure in life!

Mr. Mark Jones will be moving into the position of Chief Coordinating Officer. We look forward to working with Mr. Jones.

Update on the Waiting List:

Jim Nicholson reported that the waiting list has moved! OKDHS/DDSD was able to use lapsed funds. So far they have worked 10 Oklahoman’s off the Waiting List. It was explained that these lapsed funds were generated from individual receiving DDSD waivered services have either moved out of state, no longer need them, or have passed away. This slight movement makes the date of application for those on the Waiting List to be April 28, 2004. This is the first movement of any kind from the waiting list in more than 3 years.  Mr. Nicholson continued by saying that this movement is not even remotely acceptable to meet the needs of Oklahoman’s waiting.

Mr. Nicholson also discussed a meeting held by the Attorney General (AG) at the request of Rep. Ron Peters. Rep. Peters had asked the AG to look into the effects of the DDSD Waiting List, those residing in the two state resources centers and those receiving limited services while in need of more. At the meeting the AG said the state could be at risk because it may not be honoring the Olmstead decision handed down by the Supreme Count in 1999.  That court decision allows for states to have a “waiting list” for DDSD services, but the states are required to have “movement” at a reasonable rate.  Mr. Nicholson said again, this tiny movement doesn’t appear to “movement at a reasonable rate”.   He also reported that at this meeting with the AG they considered several ideas of how to possibly move the waiting list over a 7 year time period. There was discussion regarding how many would have to be served, how much money that would take the state, even with the federal matching funds and the likelihood that this would be a possibility. There were questions from families regarding whether or not this would be a separate bill through the legislature or would it continue to be tied into the general appropriations for OKDHS.  Mr. Nicholson didn’t have any details about this.  It was suggested to monitor Rep. Peters action in the next session.  Mr. Nicholson ended with “doing nothing is not acceptable.”

Waiting list Breakdown

Waiting list by county 

Oklahoma Sib-Shops – Lori Wathen, State Sib-shop Coordinator

Sib-Shops are opportunities for brothers and sisters of children with disabilities and special health care needs to obtain peer support and education within a recreational context. Sib-Shops recognize that having a brother or sister with a disability or special health care needs can be a big and complicated thing. Knowing and honoring this, they are able to support those siblings in recreation and safe environment with other siblings who may have the same challenges and concerns.

Lori reported that the first two Sib-Shops were started in Tulsa with the support of Oklahoma Family Network and in Oklahoma City with the support of the Down Syndrome Association of Central Oklahoma.  Oklahoma Sib-Shops are currently funded through a contract with Oklahoma Developmental Disability Council. It began three years ago with the contract ending in another year. Lori and others continue to look for other funds and resources to continue to grow this great project.

Lori said there are currently 9 active Sib-Shop programs throughout the Oklahoma. Currently they are located in Tulsa, Oklahoma City, Enid, Stroud, Norman, Muskogee, TAFB, Piedmont, Ft. Sill-Lawton and Edmond.  If you would like more information visit www.oumedicine.com/sibshops or you can contact Lori Wathen at lori-wathen@ouhsc.edu

Next Meeting

        The next DDSD Waiting List Meeting is scheduled for Friday, December 9, 2011 in Tulsa!

          It will be held at the Skyline Office Building. This is a new location. I encourage all those living in that region to try to come, bring other families who are on the waiting list, and be sure to invite your legislators. They are the one who make the decisions.

Notes From June 9, 2011 DDSD Waiting List Meeting

 32 in attendance

Represented in attendance:

14 – Parent or Family member

5 – Self advocates (individuals with developmental disabilities)

4 – OKDHS/DDSD

1 – Oklahoma Health Care Authority

1 – Oklahoma Office of Disability Concerns

4 – Agencies supporting those with developmental disabilities in Oklahoma

2 – Oklahoma House of Representatives

1 – Oklahoma State Senate

6 First time attendees (2 – Waiting, 2 – legislature & 2 – agency)

Locations represented – Norman, Oklahoma City, Noble, Anadarko, Owasso, Edmond, Morrison, Jenks, Stillwater, Pawnee, Depew, Marlow

Agency/Organizations represented: Oklahoma SoonerSUCCESS, Oklahoma SibShops,  Oklahoma Family Network, Oklahoma Autism Network, Oklahoma People First, APEX, Center for Learning and Leadership/UCEDD @ OUHSC.

• Status of the Waiting List – Jim Nicholson

As of May 16, 2011 there are 6,170 on the Waiting List

Waiting Time: (as of 5/15/2011) 6,100

Breakdown of Waiting List as of 4/15/2011

Waiting List Breakdown by county

• Update on the Waiting List – Jim Nicholson, DDSD Director

April 26, 2004 is the date of the application that is up when funding becomes available. This has not been touched since June of 2008 when the legislature released funds specifically to help those on the Waiting List.

Mr. Nicholson also discussed that the two state run resources centers (NORC & SORC) had about a 25% reduction in staff due to the voluntary buy for those wanting to retire. He also discussed that DHS/DDSD is in the process of going through a renewal with CMS (Centers for Medicare and Medicaid) for two of their waivers. CMS has a requirement for states who do receive funds for waiver services, that they will “maintenance of effort”. That maintenance of effort can be viewed as “proof” that the state will maintain or increase services/spending for the population receiving waiver services. Because of the current financial climate and the two years of stimulus funds coming to the state, it could look like Oklahoma has not maintained the same financial obligation as it did two years ago. DDSD is working with CMS to make aware how they have continued services as it was two years ago, programs have not been cut, rates have not been reduced and those receiving services are still receiving services.

Jim had also gave a brief history of the Medicaid Waiver and eligibility process and where it started. He said that when the original waiver came to Oklahoma, everyone who was eligible for the Community Waiver were at that time living in a group home or ICF/MR. So that was the criteria for eligibility. At that time, some of the “beds” were covered under the waiver and the rest were covered by “state only” slots. As the waiver program increased, the majority of beds moved to ‘waiver’ slots, with fewer covered by ‘state only’ slots. There was conversation around why are there “waiver” slot openings at group homes or private ICF/MR’s and no one was using them. Mr. Nicholson explained that currently there is no one receiving waiver services in that area interested in receiving services in that ‘slot’. He also went on to say, that as the waiting list starts to move, when it starts to move, that those ‘slots’ may continue to stay vacant because the person at the top of the list may live in a completely different area that that opening and the first in line from that specific area may be 1/3 of the way down the list. There is a need and requirement to maintain the integrity of the waiting list.

• Explanation of the Waiting List breakdown – Marie Moore, DDSD Programs Administrator

Marie came to explain how and where DDSD gets the information of those on the Waiting List.  She explained by using the current OKDHS system they are able to reconcile the names on the waiting list with those in the system who are currently receiving services, such as SoonerCare, TEFRA, State shelter workshop, community integrated employment, adult day services, etc. through the state. The list of services provided is as current as OKDHS’ system. The list of “no services” can be account for those families whose income is greater than the SSI or SoonerCare requirement.  Also, for adults receiving “no services” could be due to SSDI from an aging or deceases parent. Again, Marie noted that this breakdown of services received is as current as the date provided.

• Additional Information from the Waiting List Survey – Jim Nicholson

Mr. Nicholson commented about the waiting list survey. He said they are continuing to pull out information from that survey. One piece of interested information received from the survey was that about 25% of those answering the survey are considered low income and 15% are considered below poverty level. A question from the survey asked the families if they felt that $250 a month would benefit them to buy the needed supports for their loved ones. More than 50% answered ‘yes’ to that question.

He also said that DDSD is currently working to send out letters to all those on the DDSD Waiting List to confirm continued interest in staying on the Waiting List and will add information about Oklahoma’s Respite voucher program and how apply. The letters are ready to go out, they just need to confirm that OASIS can hand the call load if the letters generate a lot of activity.

Something else mentioned by Jim Nicholson was that for the first time the Family Support Subsidy Payment program has a Waiting List. That is a direct reflection of the current financial situation the state is experiencing.

• Family Questions & Comments

During the comment and question section, one mother who was there with her two adult daughters, one with developmental disabilities discussed an issue with the services that are available once the person is off the Waiting list. Her daughter is receiving waiver services but the services are being cut. She explained that she was told by a case manager with DDSD that the HTS hours will be cut next year to 5 hours a day. This concerns this mom to think that she will be forced to place her daughter out of her home, which is not what she wants.

Another mom there with her teenage daughter with disabilities, comment that every summer she has to quit her job because she can’t find day care or assistance through the summer.

One parent asked what is the status of the “mini” waiver to help those on the Waiting List? She said it had been mentioned at a previous Waiting list Meeting. Mr. Nicholson said that they are still considering all options, but know that currently there is no new money to support any such idea.

Another person asked the DDSD Director if he felt the Waiting list was discriminatory, and Mr. Nicholson said “no” because when funds are available they offer services in a chronological order of application date. There is no preference or needs or personal request that can change the order of those being moved off the waiting list.  Someone else asked if other states have Waiting List for DDSD services. Someone spoke up and said that the majority of states have a waiting list.

The next Waiting List Meeting is scheduled for September 8, 2011 at 2:00

OKDHS / DDSD Waiting List Meeting

Thursday – March 10, 2011

33 in attendance

Represented in attendance:

17 – Parent or Family member

5 – Self advocates (individuals with developmental disabilities)

4 – OKDHS/DDSD

2 – Oklahoma Health Care Authority

4 – Agencies supporting those with developmental disabilities in Oklahoma

1 – Oklahoma House of Representatives

12 First time attendees (8 – Waiting & 4 – agencies)

Locations represented – Norman, Moore, Noble, Edmond, Depew, Oklahoma City, Tulsa, Kingfisher, Woodward, Del City, Jenks

Agency/Organizations represented: Oklahoma Infant Transition Program, Oklahoma SoonerSUCCESS, Oklahoma SibShops, Oklahoma Family Network, Oklahoma Autism Network, Oklahoma People First, Oklahoma Developmental Disabilities Council, Oklahoma Community Providers, and OARC.

Status of the Waiting List – Jim Nicholson

As of march 2, 2011 there are 6,050 on the Waiting List

Waiting Time: (as of 12/31/10) 5,997

Waiting List Breakdown as of Dec. 31, 2010

For those legislators or anyone else who needs this information, here is a breakdown by county of those on the Waiting List.

Waiting List Breakdown by county as of Dec. 31, 2010

April 26, 2004 is the date of the application that is up when funding becomes available. This has not been touched since June of 2008 when the legislature released funds specifically to help those on the Waiting List.

Jim Nicholson was asked about the number of people removed from the Waiting List due to “emergency” situations. He said that in the past two years there have been about 171 added to DDSD services due to custody being given to the state and to the state guardian program.

Jim also reported on the survey that was sent out to families and individuals on the waiting list. The main thing he said that was discovered was that families feel isolated after they put their application in to be put on the Waiting List. Some don’t even know if they are still on the list years afterwards because there is no interaction between DDSD and those on the Waiting List.

Diana McCalment, Depew, OK – Mother of David, Homeward Bound Class Member

Diana spoke to the families about the importance of telling their stories. It was discussed that there has been comments from Oklahoma legislators regarding the fact they felt like they don’t hear from the families on the Waiting List. Diana told a story about a bill that passed not because it had a majority of people for it, but rather that legislators had received a few calls. She told of a story where one legislator said that he had seven calls that caused him to change his vote. She stressed to the families to tell your story!  She said there was information at the Partners in Policymaking website that can help families tell your story. http://www.partnersinpolicymaking.com/makingyourcase/

There was conversation once again about the state personal care program. We were told that this program is for anyone with a Soonercare active case. There is an approval process which does have a needs assessment and maybe an income qualification. Also, it is not designed for very young children.

A mother who attended for the first time asked about the  difference between a “state slot” and a “DDSD slot” at residential group homes. This mom had been trying to get her 26years old daughter into a group home but was told they only had slots available for those on the DDSD Waiver. Her daughter is on the Waiting list. She learned there are some slots that can be filled by someone in need that is not on the waiver program, but those spots are all filled. She asked if she could take a DDSD slot and pay the difference so that her daughter could still move it. It was explained that it’s not legal to do that. She expressed her frustration at trying to meet her daughter’s needs while being a single parent, where there is such a long waiting list with no hope of it moving.

There was also a family there who has an adult son with significant disabilities and they are trying to find an adult day program they can afford while their son waits. They report there is no such program that can handle is unique support needs, so one parent has to stay home with their son all the time.

the next meeting is scheduled for Thursday, June 9^th at 2:00

NOTES

Thursday – Dec. 8, 2010

27 in attendance

Represented in attendance:

14 – Parent or Family member

2 – Self advocates (individuals with developmental disabilities)

4 – OKDHS/DDSD

1 – Oklahoma Health Care Authority

4 – Agencies supporting those with developmental disabilities in Oklahoma

2 – Oklahoma House of Representatives

8 – First time attendees (2 – Waiting, 2 – Receiving, 1 House of Representative & 3 – agencies)

Locations represented – Norman, Noble, Oklahoma City, Duncan, Anadarko, Guthrie, Jenks, Mounds, Depew, Kingfisher, Ardmore

Agency/Organizations represented: Oklahoma Infant Transition Program, Oklahoma SoonerSUCCESS, Oklahoma SibShops, Oklahoma People First, Oklahoma Family Support 360’ Program, Duncan Group Homes, APEX, and OUHSC – Child Study Center

Notes

September 2, 2010

52 attended the meeting

Represented in attendance:

7 – OKDHS/DDSD

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. http://okwaitinglist.files.wordpress.com/2010/09/summary-sheet-of-request-list-with-residency_july2010.pdf

How many are in your county WAITING? http://okwaitinglist.files.wordpress.com/2010/09/rl-by-county-summary_july2010.pdf

     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

Represented in attendance:

5 – OKDHS/DDSD

12 – Parent, Family member or Self advocate

2 – Agency

1 – Oklahoma House of Representatives

4 First time attendees (2 – Waiting & 2 – Receiving DDSD Services)

Locations represented – Norman, Jenks, OKC, Edmond, Duncan and Anadarko

Agency/Organizations represented: Center for Learning & Leadership/UCEDD, Oklahoma Infant Transition Program, Apex, Duncan Group Homes, OUHSC Early Foundations, Oklahoma SoonerSUCCESS, Oklahoma SibShops and Oklahoma Family Network

Status of the Waiting List – Jim Nicholson

As of Jan 2010 there are 5,329 on the Waiting List

Waiting Time:

994 < 1 year

1,007 – 1 to 2 years

1,102– 2 to 3 years

2,226 > 3 years

Waiting List Services and Residency Breakdown 1_2010(1)

April 26, 2004 is the date of the application that is up when funding becomes available.

Self Directed Services progress for the In-Home Supports Waiver – Jim Nicholson

Jim Nicholson reported that the SDS policy has gone through the approval process of DDSD & OHDHS, it has also gone through the OHCA approval process as well. It was signed by the Governor in January. The request for proposal (bid) has been completed but has not been awarded.  Once the Financial Manager has been announced the training will begin.  All families or individuals interested in choosing Self Directing their supports and are on the In-Home Supports waiver, they will be required to attend the training. In addition, Mr. Nicholson said that you can only choose Self Direction when your yearly plan review comes around.

A Few Words From the Director – Howard Hendrick

Director Hendrick discussed once again the challenges his agency is facing with the continued budget shortfall.  He says as of this time, there are no cuts in DDSD services proposed. He did say budget reviews will continue until the states finances turn around.

Family Questions & Comments

One family asked if they were no longer moving individuals from the In-Home Supports Waiver to the Community Waiver. It was explained that the policy still stands but that the individual must utilize all other options before it could even be considered. Another parent mentioned that it’s not easy and that many of the families she talks to do not want to have to try out all the other options.

Another topic discussed was the number of children or school age students on the Waiting List who are receiving no services through any of the state offered assistance. Families asked Director Hendrick to consider other options to help those families, as after school care becomes a greater challenge as the student ages. It was also mentioned that once a child turns 18 they could qualify for SSI because their parent’s income is no longer factored in for income qualifications.

Schedule Next Meeting

Next Meeting has been scheduled for Tuesday, June 1, 2010 at 2:00

Represented in attendance:

4 – OKDHS/DDSD

7 – Parent, Family member or Self advocate

 1 – Agency

1 – Public School

2 – Oklahoma State Department of Education

Agency/Organizations represented: Center for Learning & Leadership/UCEDD, Oklahoma Infant Transition Program, OASIS, Apex, Duncan/Comanche School District, and Noble School District

Status of the Waiting List – Jim Nicholson

      As of 10/19/09 there are 5150 on the Waiting List

                  Waiting Time:

964 < 1 year

1020 – 1 to 2 years

1073 – 2 to 3 years

2093 > 3 years

April 26, 2004 is the date of the application that is up when funding becomes available.

A Few Words From the Director – Howard Hendrick

Director Hendrick discussed the funding shortfall that is affecting the state, thus affecting OKDHS.  He said as of this time, they have not cut any direct support to individuals receiving Waivered services and there are no plans to make this kind of cut. He did say they have had to make some adjustments to other programs serving individuals with developmental disabilities, though. He was asked if he felt the Family Support Subsidy Payment would be the affected the state’s current budget difficulties, and he said, not at this time.  He said that by the next meeting, he should have a better idea of affect the current state revenue has on OKDHS’ programs.

High School Graduation for Students with Developmental Disabilities – Amy Daugherty and Anita Eccard, State Department of Education, Special Education Services

                  Ms. Daugherty began by explaining that there is no state policy to graduate students at any specific time. She added that schools are monitored in their graduation performance but not specific to those on IEP’s. She said that if a school falls below the state “drop out” rate, which would include students on IEP’s who graduation date is pushed back for need, then that school is given a notice of needed improvement. She referred to this as “graduating in a timely manner”.  She said all districts are monitored by a data profile for graduation and this is where the information is collected regarding students graduating in a timely manner.  There is no difference in this data for those on IEP’s and those in traditional class settings. 

      Ms. Daugherty continued by saying that the state requires all students to pass a test to graduate and those students with the most severe disabilities will need to pass the portfolio assessment before graduation.  She said if these students do not pass this portfolio assessment they can not graduate and they will need to do this assessment until passage which will allow them to graduate. 

      Both Ms. Daugherty and Ms. Eccard encouraged families to utilize the IEP team to the fullest.  They both mentioned the need for the team to decide at what rate the student would be able to meet each class requirement. The example given was that some students learn at a slower rate, thus they may require more time to achieve their full year credit, meaning they progress about half of what is typical for students. Again, they encouraged families to invite all who know the student and their abilities and strengths to be members on the IEP team. 

      Also, mentioned from the representatives of the State Dept. of Education was that our state has moved the requirement for IEP transition from 14 years old back to 16 years old. There was some discussion of this change due to the fact some parents didn’t know there had been a change of this magnitude.

      Ms. Daugherty did say that nowhere in IDEA does it say that a student must go to school until they are 21 years old. This decision is left up to the IEP team.

Lastly, a parent asked if Oklahoma has different types of diplomas for students in Special Education and those in traditional education classes.  Ms. Daugherty said, no not at this time.  All students graduating from an Oklahoma Public School will receive the same diploma as the next. 

Schedule Next Meeting 

                  January 28, 2010 at 2:00 

      It was mentioned that there could be a possibility to have a teleconference for the next meeting, but arrangements have not been completed as of yet.

2.      Introductions

            Represented in attendance:

5 – DHS/DDSD

1 – House of Representatives

19 – Parent, Family member or Self advocate

2 – Agency & Direct Care Staff

(9 – First time attendees)

Attendees were from:

Norman, Noble, Edmond, McLoud, Oklahoma City, Anadarko, Yukon, N of OKC

Agency/Organizations represented in attendance: Oklahoma Infant Transition Program, OASIS, Oklahoma Family Network, APEX, Inc, Big Five Community Services, Oklahoma Family Support 360’ Program, Oklahoma SoonerSUCCESS

3.      Status of the Waiting List – Jim Nicholson

As of 7/16/2009

            4,905 Waiting for services

           When fund become available they will start working applications dated April 24, 2004.

That’s Greater than a 5 year wait for services!

            288 added during most recent quarter

            8 began receiving The In-Home Supports Waiver

            24 began receiving Community Waiver

            15 applications closed (not added to the waiver)

            Waiting Time Reported:

>3 years – = 1,857 38%

2 – 3 years – 992 = 20%

1 – 2 years – 1,083 = 22%

<1 year – 973 = 20%

      4. Director Hendrick spoke in detail about the budget and how some of the stimulus money is being use to offset the poor state review.  He also reported that the Office of State Finance just recently released a report saying that the state review collection is even lower than anticipated, which in turn will affect the state budget even worse.  He reported that OKDHS has approved more than 400,000 people for the Food Assistance Program (food stamps).  This is an all time high, but it is also evidence of our state’s economy.  He explained if at any point programs have to be cut or reduced or affected by the economic crisis, the first programs most likely to be reduced will be the programs that received little to no federal match, meaning the programs that are “state funded” only.  One of the “state funded” only programs mentioned that would be a huge loss for our state and the citizens if this happened is the Advantage Program, the program supporting elderly citizens to help them continue to live in their own home and not be required to move to a nursing home.  He said that programs like the Food Assistance Program, child daycare assistance, and even DDSD programs have high federal match, so it would really hurt our state if these programs were cut. 

He did explain to the group how his agency, OKDHS, has gone about reducing their over head in order to not have to cut programs or staff.  He said they have inacted a hiring freeze, they have just about reduced all travel, they have charged each of the State Resource Centers, Northern Oklahoma Resources Center in Enid, and Southern Oklahoma Resource Center in Pauls Valley, to eliminate overtime to staff, which seems to be a huge cost to each of those institutions.  He reported that these two centers are one of the highest cost to the DDSD program.  One parent asked if it would be possible to combine these two institutions, to help combine some cost, but continue to offer this support for those families who have already chose to place their family member there?  He said that they, OKDHS, is looking at all possibilities to reduce the cost for these centers.

Director Hendrick and Jim Nicholson both talked about some of the benefits DDSD continues to support.  Some of the programs that supports families directory which hold contracts with DDSD is the Oklahoma Autism Network, Oklahoma Family Network, Oklahoma Family Support 360’ program, and many others.  They both made sure to mention that there has been no reduction rate paid per hour for direct care staff, or they have not had to change eligibility in programs, either. 

5. Self Directed Services for the In-Home Supports Waiver.  Jim Nicholson explained that the SDS policy had passed the Policy Advisory Committee for DDSD.  He said the it has to pass two different committees or boards for the Health Care Authority then it will be available.  He also said they have prepared a “Request for Proposal” (bid request) looking for a financial manager.  It is thought to take about two months to get that part completely finished.  He concluded by saying, he’s best guess that the self-directive services part of the IHSW would not be available until as late as January 2010. 

6. Family questions & comments:

 One family brought up an issue that seems to be growing in our state.  This family talked about two young adult children, one living in Poteau and one living in Muskogee area, that are both on the Waiting List for services.  Neither of these families knew about DDSD programs until after their child graduated from high school.  That is when the families made application and was place on the waiting list. Both of these individuals have significant disabilities and can not be left alone. One parent is a single parent who is also caring for an elder parent, as well.  The other one is a much older parent trying to support their adult child with no outside support.  Each of these are situations that should have been noticed prior to them leaving high school, but were missed.  Mr. Nicholson said that he is requesting for a link on the front page of OKDS website, that would be for anyone who just receives a “disability” diagnosis.  This could give them step by step instructions to what is available and how to obtain applications.  This was thought to be a good idea.

Another family brought up yet another “trend” in our state with high school graduation.  Students with severe disabilities are “graduating” as if they were in traditional classes. Meaning they are graduation at the age of 18 instead of how it was traditionally done, graduating at 21.  There was some discussion about this with several of the families, the director and actually the representative who attended.  It was explained that schools are saying because of the “No Child Left Behind” policy that schools could receive a lower rating if they “hold” too many students back.  So these students are receiving their course credits, 4 years English, 3 years Math, 3 years, History, etc thus they meet the requirements for graduation so they must graduate.  They did discuss the “transition” part of the IEP’s but many of the parents said these still do not help because the students who are being kicked out of high school, without any place to go.  The director asked about the “exit” testing for each of these students, and it was explained that students with severe disabilities, who are not “testable” can opt out of testing and in place a portfolio be produced to see the “modifications” for this student.  An example of a portfolio was given, the child is non-verbal with limited communication skills, additionally blind, and high medical complications. The portfolio showing “History” showed pictures of the family where the teacher or assistant drew lines to each picture that is glued on the page and explained it’s a Family Heritage Tree.  The portfolio would also show the student holding scissors, but the student would rarely use scissors at any othe time.  There was continued discussion about how this increasing process, graduation students at 18 instead of 21, will continue to cause a drain on the system.  It has been requested that this matter be looked into more thoroughly.  Director Hendrick also requested that someone from the State Department of Education, Special Education Division, be invited to the next meeting to help us better understand this situation.

7. Next meeting is scheduled for October 29, 2009 at 2:00, same location.

      Introductions

            Represented in attendance:

5 – DHS/DDSD

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

Wednesday

1:00 PM

Sequoyah Memorial Office Building

4^th Floor South Conference Room

ddsd_waitinglist_map

Families waiting or receiving DDSD services:

11 families/individuals on the DDSD Waiting List

7 families receiving DDSD services

April 30, 2008

1:30 pm

Represented in attendance:

4 – DHS/DDSD

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:

Norman

Tulsa

Noble

Moore

Yukon

El Reno

Midwest City

Edmond

Pawnee

Stillwater

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

Areas represented:
Norman
Oklahoma City
Pawnee
Stillwater
Tulsa

DDSD is currently working applications from April 7, 2004.  We were told the waiting list is virtually stalled at this time.  The only person’s moving onto Waiver services are those who are in DHS custody, those who meeting the Emergency guidelines or those in the Public Guardian program.  We were also told that during the month of December 2007 that a total of 34 people were removed from the waiting list.  Of those taken off the waiting list 21 began receiving services and 13 were either closed, declined, or were not eligible.  Also in the month of December 93 people were added back to the waiting list.  You need to note that some of those who “declined” did so because they were receiving the Family Support Payment which meets their needs at this time.  Thus would then be added to the bottom of the waiting list.  It was also said that of those on the waiting list only about 15% have been waiting for more than three years.Jim Nicholson discussed the issue of high cost to agencies for required training of HTS staff, and the high turnover/retention rate of staff as well.  One of the ways DDSD is trying to help with this issue if by contracting with an online training program what would allow HTS staff and agencies to train at times convenient to both.  The online training would also allow for the HTS to have access to all previous completed courses which will make moving from agency to agency a smoother and less costly transition.  This project is estimated to be released in the next 30 days.  Additionally, he said this training would be available to families as well.

One more note of interest.  It was said that dental services were added as eligible services for those on the Community Waiver as of October 2007.

Sue Robertson with the Oklahoma Health Care Authority,  Child Health Program Coordinator spoke about a request that has been sent to CMS requesting the expansion of eligibility for children (birth – 19) applying for Medicaid.  CMS is still in the process of reviewing and has not made a decision as of yet.  If the request is approved it will change the income eligibility from 180% of poverty to either 250% or 300%.  What this could mean to families, if you had applied for Medicaid in the past and were denied do to your families income being too high, you may qualify once this program comes into effect.  This would help many people waiting for services on the waiting list.

Someone had mentioned to Sue Robertson the difficulties some families are having at qualifying for TEFRA.  The point was made that to qualify for TEFRA under the ICF/MR (Intermediate Care Facility for persons with MR) the person must have an IQ score of 70 or below.  When a child under that age of 6 is applying they are having 1) difficulty in finding someone who will give an IQ score for a person that young and 2) affording the cost of these evaluation.  Director Hendrick said if the problem is affording a Psychologist to perform the evaluation, that DHS could possibly afford to have a Psychologist on staff to do these.  Also, he has asked Jim Nicholson and Sue Robertson get together and figure out what is the issue with getting kids qualified if they should qualify.

The next meeting is scheduled for April 30th at 1:30.