Meeting Notes from 2012

NOTES

OKDHS / DDSD Waiting List Meeting
Tulsa
Thursday – December 18, 2012
1:30 PM

7040

Working application date: August 2004

66 in attendance

Represented in attendance:

41 – Parent or Family Member

5 – Self-Advocate (person with a disability)

6 – OKDHS/DDSD

2 – Oklahoma House of Representatives

12 – Agencies supporting those with developmental disabilities in Oklahoma

45 – First time attendees

Representing someone on the Waiting List – 34

Locations represented – Norman, Tulsa, Owasso, Claremore, Broken Arrow, Sapulpa, Sand Springs, Oklahoma City, Jenks, Bixby, Stillwater, Yale, Inola, Haskell, Chouteau, Depew, Pryor,

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC, Oklahoma SoonerSUCCESS, TARC, Eagles View, Inc., Volunteers of America, Ability Resources, Home Life

Introduction of OKDHS Director Ed Lake

Director Lake introduced himself to the group. He welcomed everyone and thanked them for coming. He said he has only been on the job 12 days, and he’s eager to learn more about the situation with families on the DDSD Waiting List

Waiting List Update – Jim Nicholson, DDSD Director and Wanda Felty, parent

Jim Nicholson reported they are no longer stuck on application date of April 24, 2004. They are working applications from August 2004. Because of the appropriations from SB 1979 during last legislative session, DDSD has been slowly working the waiting list. Mr. Nicholson went on to say that because of the amount of time individuals have been on the waiting list, more than eight years, it has been extremely difficult to find those at the top of the list. This was something not expected for the degree its taking. DDSD explained that they are taking their time and doing as much as possible to locate the individuals before they decide to close the application.

Mr. Nicholson reported that at the last OKDHS Commission meeting, the Commissioners voted to close both the state institutions, Northern Oklahoma Resource Center – Enid, and Southern Oklahoma Resource Center in Pauls Valley. In the Resolution presented by the Chair of the OKDHS Commission, Wes Lane, the Commission requested the Governor establish a “Blue Ribbon Panel” to look at how best to address the DDSD Waiting List and other services for those with developmental disabilities in Oklahoma. Mr. Nicholson hopes the Blue Ribbon Panel will look at cross agency collaboration and attempting to meet the needs of all individuals with developmental disabilities in Oklahoma.

A few days after the Commission voted to close the institutions, the people of Oklahoma voted to abolish the OKDHS Commission and turn over oversight to the Governor. With this vote to abolish the Commission, a bill passed in last legislative session, created the establishment of four Citizen Advisory Committees, Aging Services, Children and Family Services, Administration and Developmental Disability Services. Each Advisory panel will have five members, with one member on each panel appointed by the Governor, the Speaker of the House, the Senate Pro Tempore, the Minority House Leader and the Minority Senate Leader. At this time no appointment has been made to the Developmental Disability Advisory Panel.

Someone asked Mr. Nicholson “What do families need to do?” Mr. Nicholson said to recommend to your legislator someone you feel needs to serve on the panels, or to testify about what is working or not working.

Someone asked about the $1 Million appropriation from last legislative session, how many applications have been processed and so forth. A DDSD staff reported that there are about 100 applications in pending/review, which means they are working through locating and processing those applications. She also reported that there is about 75% of the $1M left to serve the waiting list.

Prior to the $1 Million appropriation, Mr. Nicholson reported that there were 191 individuals added to waiver services but only 9 of those came off the waiting list. He explained that because of “emergency cases” coming through child welfare those individuals do not even have to be on the waiting list. He would like to see those serves paid for by the Child Welfare division and keep those funds to serve individuals from the waiting list.

Another question posed to Mr. Nicholson was “Is there any federal mandates of what Oklahoma should be doing as for as the waiting list?” Mr. Nicholson said he wasn’t aware but that each state was allowed to waiting list but was required to make substantial effort to address meeting those needs. He continued to say, a waiting list of more than six years is not look like “substantial effort”.

It was discussed that any person who has applied to DDSD services to contact their area office and make sure the information, address, phone number, etc. was current and up to date. JoAnne Goin, Area Supervisor from the Tulsa office, added that any of the area offices would be more than happy to look that up because in the long run it decreases the time when a person’s name comes to the top.

Jim also talked about the Waiting List survey that DDSD did a few years back. He is planning to do a follow up survey to those involved to see if they can get more information of what is truly needed of those waiting.

There was a question asked of Mr. Nicholson about is working the waiting list in order of application, is that the best way to do it?  Shouldn’t it be on needs?  Jim explained that the waiting list was set up as part of the legal action following the closure of Hissom and it was decided then it would be first come first served.

State Representative attending the meeting asked “Is it money that is needed?” and it was a pretty loud response from those attending “YES!” She verified that all those served off the waiting list would qualify for the Federal Medicaid match, and Mr. Nicholson responded with “Yes”.

A parent suggested that DDSD send out yearly postcards to those waiting to help keep contact information current and to keep DDSD connected to those families.

Wanda Felty reported on the DDSD Waiting List Breakdown


CountyBreakdown12-12

(Click image to enlarge)

Here is the “key” to the information on the sheet.

Pink – This represents the age that would typically be in school, K-12, noting that not many students remain in school after their 12th grade but by law they are allowed to stay until their 22nd birthday.

These children could need after school care because there are not many daycare programs in the state that are qualified or comfortable to take a child with a significant disability.

These children could also need summer support, assistance with medical co-pays, therapies that are not typically offered in the school.

Green – This represents those individuals who have graduated from high school and they may need a program to keep them safe, work on improving the skills they learned during school.

This population may have been in school and both parents work, but after graduation one parent had to give up working to stay home and support their child. This population also represents the age group who should be working on skills to obtain meaningful employment.

Yellow – This represents the group of individuals who are aging. They range in age of 56 years old all the way to 82 years old. The question was posed, how old are their caregivers?

The left side of the top box show the time each age group has been WAITING with a total in the middle. The right side of the top box shows what each one of age groups are receiving, or not receiving through the state. The key of each program is just below that box.  The box at the bottom right shows where each person on the waiting list is living as of the time of application, most likely.

DDSD Breakdown by County

Family Questions & Comments

One mom asked if there was a waiting list for the Community Waiver, and the answer was no. Individuals can move from the In-Home Supports Waiver to the Community Waiver if their needs meet that high level of services.

One mom said she was going to have to quit her job to care for her daughter because she is graduating from high school. She said she knew about DDSD and the waiting list but didn’t know there was no services after graduation to support her daughter so she can be safe while this mom works. She wishes now that she would have put her daughter on the waiting list much sooner.

One dad asked how to determine if his son was still on the waiting list. He was encouraged to call the DDSD area office to find out. He connected with Ms. Goin for more information after the meeting.

It was suggested that parents on the Waiting List be informed about Partners in Policymaking. (Link to Partners in Policymaking)

It was pointed out that on the DDSD Waiting List breakdown that is shows there are 22 people “incarcerated” on the waiting list. DDSD said they would look into that.

One more of a teenage daughter spoke about her daughter’s high level of needs to be safe and her inability to provide for her. Her daughter requires 24 hour direct visual supervision and she is very tired and exhausted. She pleaded for someone to please consider her situation and find some kind of help for her family and daughter.

Next Meeting

Thursday, March 21, 2013

Sequoyah Building – Oklahoma Capitol Complex

Room C-47 (Basement)

1:30 PM

NOTES

OKDHS / DDSD Waiting List Meeting
Thursday – September 27, 2012
1:30 PM

 

 

Working application date: July 21, 2004

38 in attendance

Represented in attendance:

21 – Parent or Family Member

2 – Self-Advocate (person with a disability)

4 – OKDHS/DDSD

2 – Oklahoma Health Care Authority

1 – Governor’s Office

2 – Oklahoma House of Representatives

3 – Oklahoma Senate

3 – Agencies supporting those with developmental disabilities in Oklahoma

 

6 – First time attendees

 

Representing someone on the Waiting List – 17

Locations represented – Norman, Oklahoma City, Edmond, Stillwater, Midwest City, Guthrie, Noble, Oklahoma County/Forrest Park, Duncan

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC, Oklahoma People First, Oklahoma SoonerSUCCESS, Oklahoma Developmental Disabilities Council – Oklahoma Partners in Policymaking, Oklahoma Family Network, Oklahoma Autism Network, Oklahoma Disability Law Center and Oklahoma Foundation for the Disabled

Waiting List Update – Jim Nicholson, DDSD Director

Mr. Nicholson reported there are currently 6,958 on the DDSD waiting list as of September 24, 2012. He said the next application that will be assessed for services is from July 21, 2004. He reminded us that for more than four years Oklahoma was stuck on application date April 28, 2004. While it’s not a huge jump in working application, some movement is better than no movement.

Mr. Nicholson explained there were more than 100 individuals added to DDSD service but only 8 or 9 were actually from the Waiting List. He explained that most of those who began receiving DDSD waivered services where placed through either the Public Guardian program or the Child Welfare program once the state takes custody due to abuse or neglect. He was asked by a parent “So if the family works through their ‘program’ and receives the help they need to help them cope or whatever and they and their child are reunified, will the waiver services transfer with them. He said yes, and it would be based on need. Another parent observed out loud, “Sounds like a short cut around the waiting list”. Mr. Nicholson said it could appear that way.

Wanda Felty explained the two hand-outs, the DDSD Waiting List Breakdown (below) and the DDSD Breakdown according to county (link below).

(Click image to enlarge)

I explained the color coding on the first sheet and added explain for each population.

Pink – This represents the age that would typically be in school, K-12, noting that not many students remain in school after their 12th grade but by law they are allowed to stay until their 22nd birthday.

These children could need after school care because there are not many daycare programs in the state that are qualified or comfortable to take a child with a significant disability.

These children could also need summer support, assistance with medical co-pays, therapies that are not typically offered in the school.

Green – This represents those individuals who have graduated from high school and they may need a program to keep them safe, work on improving the skills they learned during school.

This population may have been in school and both parents work, but after graduation one parent had to give up working to stay home and support their child. This population also represents the age group who should be working on skills to obtain meaningful employment.

Yellow – This represents the group of individuals who are aging. They range in age of 56 years old all the way to 82 years old. The question was posed, how old are their caregivers?

The left side of the top box show the time each age group has been WAITING with a total in the middle. The right side of the top box shows what each one of age groups are receving, or not receiving through the state. The key of each program is just below that box.  The box at the bottom right shows where each person on the waiting list is living as of the time of application, most likely.

 

The second sheet, DDSD Waiting List Breakdown by county and passed out as well. This is the current breakdown of those waiting according to counties. I suggested, after talking with a candidate who didn’t realize there were many individuals in his district on the waiting list, to share this with any legislator or candidate for state office. I explained that they don’t know what they don’t know. Help them understand that every county has someone on the Waiting List.

 

Update on funds appropriated through SB 1979 – Jim Nicholson, DDSD Director

Mr. Nicholson reported that DDSD is in the process of assessing individuals off the waiting list in order to use the $1 Million allocated through SB 1979. He explained that due to the length of time of the waiting list, the assessment process takes a little more time than it did in the past. Most individuals have to have a psychologically evaluation to determine they meet the MR diagnosis requirement. He said at this time they have only began fully serving about 12 individuals, but would be able to report more in time. It was also suggested after serving all the individuals possible with allotted money, report the number of individuals who desired to continue receiving the Family Support Subsidy check instead waiver services.

Mr. Nicholson explained that also in SB 1979 there was an appropriation for an increase of provider rates, for aging services and for disability services. That appropriation is expected to raise provider rates by $0.24 an hour. He continued by explaining the providers have not had a rate increase since 2006, but yet the minimum wage has increased three times during that time period.

Family Questions & Comments

Sen. Greg Treat asked to explain misinformation going around about the State Question 765. Sen. Treat wanted to dismiss the rumor that DHS would “go away”. He went on to explain that DHS would continue to operate as it always has, the oversight and operation would change from the authority of the DHS Commission to the director. He went on to explain that currently Oklahoma is the only state using a commission to operate human service departments. If state question does pass, the authority will be handed to the director and the hiring of the director will be place on the Governor. The state question is only about removing the authority of the commission to the director and the hiring of the director from the commission to the Governor. If state question 765 is passed by the vote of the people in November HB 3137 will become active. This bill creates four citizen advisory committees. The committees will have five appointees and will focus on specific areas of operation at DHS, aging, children and family, disability and administration. HB 3137 also defines how each of these committees will be appointed; the Governor, the Speak of the House, the Senate President Pro-Tem, the House minority, and the Senate minority.

There was questions from family members asking Sen. Treat how would we be assured that a family member would be on the disability citizen advisory committee. Sen. Treat said there was no specific requirement to have a family member on these committees but that could be changed later if there is reason to believe it is needed. The mom’s speaking both said it was needed.

*** Since the DDSD Waiting List Meeting, state question 765 did pass which means the DHS Commission has been dissolved. HB 3137 has now been placed into action. To read HB 3137 click here. ***

A mom from Oklahoma City spoke up and told about an issue she had experience while her son was on the waiting list. Her son’s medical condition caused him to have difficulty in consuming enough nutrition to stay healthy. The pediatrician prescribed her son to start on a liquid nutrition supplement, something like Pediasure. Since this is not a controlled supplement, and was not administered through a g-tube SoonerCare (OK Medicaid) would not pay for it. This is a single mom with a low income and she was not able to pay for it. Someone asked the DDSD staff if this child would have been on the waiver would the waiver have paid for this supplement? The staff said yes.

A dad from rural Oklahoma spoke about a situation his adult son has experienced over the past few months. His son is currently on SSI which allows him to be on SoonerCare (OK Medicaid) for adults. SoonerCare has a co-pay requirement for prescriptions and a limit to the number of prescriptions someone can get each month. This dad reported that his son had a change in medical conditions and the need for a change in medication. Because he had already filled the prescriptions for that specific month, his son was required to cover the full amount of the prescriptions. They were put in the situation to decide which medication they could afford or wait until the new month rolled around to allow SoonerCare to help supplement the cost. Additionally, this dad reported that each month his son is allowed six prescriptions covered by the SoonerCare co-pay program. This young man has almost 12 medications needed each month. This family is often challenged with deciding which medication he needs most, which is best for SoonerCare to cover and trying to decide which they can actually pay for. Someone asked the DDSD staff if this young man was on the waiver program would the prescriptions be covered? She reported yes, the waiver would cover the prescriptions and this young man would not be in this situation.

Next Meeting – TULSA
Tuesday, December 18, 2012 1:30 PM
Skyline East Building – 5th Floor Conference Room
6128 E. 38th
Tulsa, OK

NOTES

OKDHS / DDSD Waiting List Meeting

Sequoyah Memorial Office Building C-47

Thursday – June 21, 2012

1:30 PM

6756 Waiting

Working application date: July 7, 2004

32 in attendance

Represented in attendance:

21 – Parent or Family member

5 – OKDHS/DDSD

1 – Oklahoma Health Care Authority

4 – Agencies supporting those with developmental disabilities in Oklahoma

1 – Medical Student

First time attendees – 9

Representing someone on the Waiting List – 11

Locations represented – Norman, Oklahoma City, Edmond, Tulsa, Stillwater, Kingfisher, Mustang, Midwest City, Anadarko, Noble, Pryor, Jenks, Guthrie

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC, Oklahoma People First, Oklahoma SoonerSUCCESS, Oklahoma Developmental Disabilities Council – Oklahoma Partners in Policymaking, Oklahoma Parent Center, Oklahoma Autism Network, Excel Learning Center, Excel Special Services, Apex Inc. Goodwill Industries, Rescare, Noble Public School, Oklahoma Disability Law Center

.

 

  1. OKDHS update – Mark Jones, OKDHS Chief Coordinating Officer

Mr. Jones reported on the search for a new Director of OKDHS. He said they had two candidates from their national search but continue to search nationally for the right person. He was asked about what will happen due to the vote of the people in November. Mr. Jones explained that there was a “Resolution” passed in the last legislative session. This was House Joint Resolution 1092 (HJR 1092). With the passing of this resolution it allows the citizens of Oklahoma to vote to keep or abolish the DHS Commission. In this same resolution it also would move the hiring of the OKDHS director out of the DHS Commission’s authority and to the authority of the Governor. He explained again that because the Commission and the authority of the DHS Commission in written in the Oklahoma Constitution, the only way to repeal or remove it, must be a vote of the people. He said at this time he did not know the State Question number (updated information – SQ 765)

In addition to explain about the HJR 1092, Mr. Jones continued to explain how HB 3137 could affect OKDHS and DDSD. He explained that with the passing of HB 3137 it is established that if the state question passes (the abolishment of the DHS Commission and all their authority) that this bill would establish four “Citizen Advisory Councils”. The four councils would be: Administration, Disability, Aging and Children/Family.

  1. Update on the Waiting List – Gwen McClain, DDSD Deputy Director

Ms. McClain reported that the current number of the waiting list is 6757 and the application date is July 7, 2004. Ms. McClain also talked about the funds handed down for the legislature with the passing of SB 1979. She said this bill gave $1 million to support those on the Waiting List. She said they estimate that remove 200 people off the list. She also explained that DDSD has established and tracking method so that a report of how the appropriated funds were used. In addition to the appropriations for the Waiting List, SB 1979 also allowed for an additional $1.5 million to increase the provider rates for DDSD services.

  1. Self-Directed Services (SDS) – Lisa DeBolt – parent

Lisa DeBolt from Jenks, Ok spoke about the Self-Directed Service option for individuals receive services through the In-Home Supports Waiver. Ms. DeBolt told use that her son was on the SDS pilot and moved to the SDS option when it was joined with the IHSW. She explained that the SDS option is an option where the parent or a chosen person will be the “employer of record” and will take the place of the agency on the regular waiver. She said this leaves the responsibility of hiring and firing, and even locating staff to the parent. While this option does allow for more flexibility in the pay rate, there is still some limits and restrictions. The SDS option is only for “Goods and Services” when prescribed and written with outcomes and goals that can be measured and tracked. She also mentioned that the parent or employer of record would be responsible for assuring all the needed paper work is turned into DDSD. This is usually performed by the agency. Ms. DeBolt she preferred SDS for her son’s HTS due to the fact she could pay a higher rate per hour than the agencies because she’s not burdened with the cost of agency overhead. She did say that there is an agent who does the payroll withholding and such, and that comes out of the hourly rate. She said that the required training for HTS staff can be paid by the IHSW, too. Each staff is required, the same as if they worked for an agency, to have CPR/First Aid prior to working with an individual.

  1. Next Meeting

Thursday, September 27, 2012

1:30 PM

Location to be determined

NOTES

OKDHS / DDSD Waiting List Meeting

Thursday – March 22, 2012

6563 WAITING

37 in attendance

Represented in attendance:

19 – Parent or Family member

5 – Self advocate (individuals with developmental disabilities)

1 – House of Representatives

3 – OKDHS/DDSD

1 – OKDHS Commission

7 – Agencies supporting those with developmental disabilities in Oklahoma

1 – Agency representing child advocacy in Oklahoma

First time attendees – 10

Representing someone on the Waiting List – 14

Locations represented – Norman, Oklahoma City, Edmond, Tulsa, Ardmore, Stillwater, Depew, Kingfisher, Mustang, Midwest City, Anadarko, Blanchard, Noble, Rush Springs

Agency/Organizations represented: Center for Learning and Leadership/UCEDD @ OUHSC,  Oklahoma People First, Oklahoma Community Providers, Oklahoma SoonerSUCCESS, Oklahoma Partners in Policymaking, Oklahoma Infant Transition Program, Oklahoma Family Network, Oklahoma State Department of Education, Oklahoma Autism Network, Excel Learning Center, Excel Special Services, Apex Inc., Today’s Therapy Solutions, the Bridges Foundation, Child Advocacy Centers of Oklahoma, OASIS

  •  Recent Events with OKDHS Management – Mark L. Jones

Mr. Jones explained that the OKDHS Commission is the governing body for DHS. Each commissioner is appointed for a 9 year term. The commission appointments are staggered so that one will roll off each year with a new appointment that same year. Mr. Jones also explained that the Governor is the appointer for each commission and also choose the chair of the Commission. This year Mr. DeVaugh will have met his 9 year appointment term and will roll off the commission. Gov. Fallin will then appoint to fill his position.

Mr. Jones continued to explain that to DHS Commission also is the body who will decide who to hire as director of OKDHS. They are also the one who chooses the Interim director after the retirement of Director Hendrick. It was announced that day, that Interim Director, Commission Terri White has stepped down as Interim Director of DHS because of a statute that would not allow a person to hold two directorships a the same time. Terri White is the Commissioner of Oklahoma Mental Health and Substance Abuse Services. Mr. Jones continued by saying the director of the Office of State Finance will be taking a temporary leave from that position to serve as Interim Director of OKDHS.

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

Mr. Nicholson reported that the application date for the Waiting List is June 2004.  He talked about the issues challenging the Southern Oklahoma Resource Center (SORC), which is the need to have the center fully “sprinkled” to meet the federal requirement to maintain federal funding. He reported that there have been many meetings with the Parent – Guardian Association from SORC and their only request is to keep the facility opened and improved. The deadline for the sprinkler system to be installed is August 2013.  Mr. Nicholson reported that OKDHS/DDSD has presented three plans to address the issues at SORC to the DHS Commission and all three have been rejected. He also explained that there was a “Joint Resolution” with a voice vote that state the Legislature wants to “reject” the OKDHS/DDSD proposal which would greatly reduce the residents at SORC.

  • Family Questions & Comments

Families were reminded of the upcoming Developmental Disabilities Awareness Day at the Capitol. It is scheduled for April 11, 2012. All are invited and the topic will focus on the Waiting List.

Families were invited to tell their stories:

One mom spoke about her adult son who graduated from high school several years ago and he has no program or activity during the day. He only receives SSI which should cover his living expences but they are having to use some of those funds to pay for him a day activity program a few times a week. This mom is eager to get back to work once he comes off the waiting list.

One mom spoke about of friend she is trying to help who is dying with end-state liver disease. This woman’s son is a young adult with developmental disabilities and is on the waiting list. It was asked whether or not this child would qualify to move up the waiting list with the grave nature of his mother’s medical condition? It is thought so, and advice was given to bring back to the mom.

A single mom from Payne county spoke about the challengers she has with her daughter. She said her daughter hasn’t been in school full-time since last November due to her complex high support needs. She is trying to work but isn’t able to due to her daughter’s situation. When asked how her daughter sleeps at night, and if she actually gets rest, this mom replied with “what’s that?” The group had conversation about the lack of sleep and the stress this can cause to a caregiver of person with developmental disabilities.

Another mother reported her daughter, who was in attendance, can go days with no sleep. When asked how do you keep her safe, this mom said she stays awake as much as she can to keep her safe but does fall asleep from time to time.

Another mom reported that her soon graduate from high school and lose all the therapy he is currently receiving through the school. She is very fearful that when those therapies are lost, he will regress and stop talking and go back to the way he was. She is very afraid for her son.

Lastly another mom asked about the Department of Justice and why are they not looking at Oklahoma. There was a little discussion about how a parent can contact the DOJ to inquire about what they can do.

Advertisements