Meeting Notes from 2011

 

NOTES

DHS / DDSD Waiting List Meeting – Tulsa

December 9, 2011

6401 WAITING

61 in attendance

Represented in attendance:

28 – Parent or Family member

6 – House of Representatives

2 – Oklahoma Senate

4 – Self advocates (individuals with developmental disabilities)

7 – OKDHS/DDSD

1 – OKDHS Commission

1 – Oklahoma Health Care Authority

11 – Agencies supporting those with developmental disabilities in Oklahoma

1 – News Media

First time attendees – 40

Representing someone on the Waiting List – 25

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

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

 

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

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

Waiting List Survey points worthy of notice:

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

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

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

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

Date of next application is April 28, 2004

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

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

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

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

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

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

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

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

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

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

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

Legislator’s comments during the meeting:

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

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

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

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

 

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

1. Next Meeting

 March 22, 2012 at 1:30PM

Sequoyah Memorial Office Building C-47

Capitol Complex – Oklahoma City, OK

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

Waiting Time:	Ages of those Waiting:
< 1 years = 645 or 10%	Birth to 18 years old = 3,059
1 to 2 years = 935 or 15.5%	19 years to 55 years = 2,848
2 to 3 years = 976 or 16.5%	55 years and older = 193
3 to 4 years = 1,110 or 18%
4 to 5 years = 895 or 15%
5 to 6 years = 858 or 14%
> 6 Years = 681 or 11%

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 Time:	Ages of those Waiting:
< 1 years = 727 or 12%	Birth to 18 years old = 3,060
1 to 2 years = 1,046 or 17%	19 years to 55 years = 2,750
2 to 3 years = 932 or 16%	55 years and older = 187
3 to 4 years = 1,087 or 18%
4 to 5 years = 883 or 15%
5 to 6 years = 805 or 13%
> 6 Years = 517 or 9%

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