NOTES
DDS Waiting List Meeting
September 8m 2016
Working application date: February 2, 2006
Attendees: 26
Represented in attendance:
11 – Parent or Family Member
1 – Self-Advocate (person with a disability)
5 – DHS/DDS
2 – OHCA (Health Care Authority)
1 – OSDH (State Department of Health)
1 – News Media
1 – State Representative
1 – Candidate for Oklahoma House of Representatives
(Thank you Rep. Cyndi Munson and Roger Ford for coming to hear and learn from families)
Representing those on the Waiting List – 6
First Time Attendees – 6
Locations represented – Edmond, Norman, Kingfisher, Cashion, Oklahoma City, Mustang, Tulsa
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Oklahoma Family Network, Sooner SUCCESS, Oklahoma Developmental Disabilities Council, Tulsa ARC, Oklahoma Watch, Office of Client Advocacy, Special Courage Advocacy
DHS Update including budget – Mark Jones, DHS
Mr. Jones reported that with last the budget handed to DHS from the state legislature, they were short $100M in needed funds. DHS has some programs they are not allowed to cut or reduce such as Child Welfare in regards to the Pinnacle Plan. He also said the state match has increased thus causing a greater financial stress on DHS to provide the services needed. Mr. Jones said DHS looked internally to try and address the shortfall with administrative cost reductions. DHS offered VOBO’s (Voluntary Out Benefit Offers) three different times and is now moving forward with RIF’s (Reduction in Force). DHS was able to save $45M internally in addition to cutting or eliminating contracts for programs such as the program to support volunteer guardians or a program for kids with autism. Mr. Jones says even with the internal cuts DHS will not have enough money to cover the full year of services. DHS plans to request a supplemental funding when the legislative session starts in February. DHS has reduced staff by 1,200 over the past two years. Marie Moore reported that DDS has reduced their staff by over 27%, from over 600 staff to 489. She reports that most of the staff was not case managers or field staff.
Waiting List Update – Marie Moore, Interim DDS Director
Waiting List Breakdown, Age, Services, Residence
Waiting List Breakdown by county
Ms. Moore reported the date of application to be February 2, 2006, which is the same date as at the last DDS Waiting List meeting. She was asked the number of people that were added to the Waiting List. There were 32 people added to the list this past month which is in line with the average of about 30 a month added to the list. When asked about how many people were added to DDS waivers, she reported that in FY 16 there were 116 due to emergency situations. She also reported that more than half were children and most if not all are in custody of the state or public guardian. Someone asked how many were under the Public Guardian, Mr. Jones reported that the Public Guardian only has about 40 people in all so not many. Someone asked what is the Public Guardian, Mr. Jones explained that the Public Guardian is a court order placement, when the person is charged with a violent crime but has been determined “incompetent” to stand trial due to an intellectual disability and is considered a “danger to society”, they are placed in the care of the Public Guardian. Mr. Jones said these individuals are then placed in a “alternative group home”.
Ray Hester from DDS spoke about a new process to support senior citizens on the Waiting List. DDS has started calling all people on the Waiting List who are 65 years or older and offering the support through the Advantage Waiver. The Advantage Waiver is the waiver for adults with physical disabilities and the elderly. Mr. Hester said the DDS In-take staff is making contact with each of the individuals, their guardian or advocate and explaining what the Advantage waiver can do. If the person is interested in pursuing this support or wanting more information, DDS In-take will then forward their information to the Aging division for a follow-up. Mr. Hester said this new process has only been going on for about a month. So far they have referred about five people to the Aging division, there have been a few who were not interested in the Advantage or even DDS, some were already on Advantage, and some they are still trying to locate. Mr. Hester reported that a person who is choosing to accept the services through the Advantage Waiver will NOT be removed from the Waiting List and they will maintain their date of application.
One mom asked where families can get general information. She mentioned a challenge she had with her adult son’s services through DHS. She said that she received two different forms from the Kelly office at two different times during the year. She said one form was a short form and one was longer. When she asked someone they advised her to ignore one (this is not advised until you have full understanding of what the form is and what is required). She mentioned a Volunteer Guardian program and the loss of that program through TARC.
It was reported by Ms. Moore that the Volunteer Guardian program was brought “in-house” at DDS. Chris Castleberry is the contact person at the state office. His phone number is 405-521-4982
Discussion: Kathryn Brewer, Advocate General from the Office of Client Advocacy, explained that her office has a program called the “Special Advocates” unit. Ms. Brewer said that if a person has an issue with services for people with developmental disabilities or accessing those services, they can call her office and open a case with the Special Advocates unit. She said typically this unit is for specific issues with the projected outcomes being met within 90 days. She did explain there has been times it has taken longer, though. The phone number to the Office of Client Advocacy is 405-522-2720.
Personal care was a discussion point, too. Personal Care is a service provide through DHS or OHCA. Personal Care provides individual care to a person with a disability who needs assistance with personal care and daily living. Anyone on SoonerCare (Medicaid) can apply for Personal Care. To apply (Children on SoonerCare through TEFRA apply through OHCA) need to apply through their local DHS office. The program is managed through the Aging division, but children can apply. **One parent mentioned that they called the local office and was told that the program is only for people over the age of 21 – NOT correct. If a child is on SoonerCare through TEFRA, they will need to call 1-877-252-6002 to apply.
Personal Care: One parent asked if the child is receiving personal care, can the personal care aid (PCA) be left alone with the child. The representative from OHCA said No. I have asked to see the policy to confirm this. The representative explained that the PCA is not trained and that they are paid very low rates. A parent then said that the PCA’s are paid the same rate that HTS is paid and they receive no specialized training especially if they are a child on the IHSW.
Request from a parent: If the PCA is paid the same rate that HTS is, and if there is a policy restricting them from being alone with a child, the policy needs to be changed.
Personal care is a service that can meet a huge need for children with disabilities and the child DOES NOT have to be on a waiver, help while they wait!
Next Meeting Tulsa
Thursday, December 8, 2016
Skyline East II
6128 E 38th Street
Tulsa, OK 74135
Conference Room 3600
1:30 pm
********************************************
Notes
DHS / DDS Waiting List Meeting
Thursday, June 2, 2016
1:30 PM
Working Application Date: Feb2, 2006
Attendees: 37
Represented in attendance:
17 – Parent or Family Member
8 – Self-Advocate (person with a disability)
5 – DHS/DDS
2 – OHCA (Health Care Authority)
1 – OSDH (State Department of Health)
2 – Candidates for Oklahoma House of Representatives (HD 97 & 95)
(Thank you Willis Washington and Roger Ford for coming to hear and learn from families)
Representing those on the Waiting List – 14
First Time Attendees – 12
Locations represented – Norman, Del City, Kingfisher, Oklahoma City, Edmond, Yukon, Moore, Cushion, Midwest City, Arcadia, Tulsa, Mustang
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Oklahoma Family Network, Sooner SUCCESS, Oklahoma Autism Network, Oklahoma Developmental Disabilities Council, TARC, Oklahoma Family Network, OCA
DHS budget is bleak. They have a shortfall of $150,000 to cover all the expenses of the agency. There was a “limits” bill that protected DDS waivers and providers along with aging waivers and providers. DDS has lost a large number of their administrative staff. By the end of this month, they are expecting to be down by 27% overall. This is not including the staff affected by the closing of the two state ran institutions. At the time of the meeting, DHS/DDS had not determined the affected to the programs completely. It was mentioned that in the childcare subsidy program, that support could end for working parents.
DDS Waiting List Breakdown (two pages)
*** New information on the Waiting List breakdown: The number of years have been expanded to you will be able to see who has been waiting seven years or more than seven years. Additionally, we added a category to servers receiving while waiting, by adding the Adult Day program funded out of the Aging division.
Waiting List Breakdown by County (two pages)
There was a nice discussion around who is the decision makers regarding the money the state brings in and how it is determined to be spend. One parent strongly encouraged all families to meet with their candidates for state office. Ask what they feel the role of government is in support people with developmental disabilities.
There was a discussion from OHCA regarding Personal Care services and how a child on SoonerCare through TEFRA can make an application for this services. More information is on this flyer.
One comment from an attendee was regarding private duty nursing and an issue around providers NOT attempting to find nursing to fill the approved hours on weekends or nights.
We also learned that TARC’s volunteer guardian program will end at the end of this month due to lack of funding.
Next Meeting – OKC
Thursday, September 8, 2016
Sequoyah Building – Capitol Complex
Room C-47 (Basement)
1:30 pm
Notes
DHS / DDS Waiting List Meeting
Thursday, March 10, 2019
1:30 PM
Attendees: 20
Represented in attendance:
14 – Parent or Family Member
2 – Self-Advocate (person with a disability)
5 – DHS/DDS
1 – OHCA (Health Care Authority)
Representing those on the Waiting List – 13
First Time Attendees – 3
Locations represented – Norman, Edmond, Blanchard, Mustang, Moore
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Oklahoma Family Network, Sooner SUCCESS.
Waiting List Breakdown by County
Parent Comments:
One mom who has an adult daughter on the waiting list, talked about numbers. She said how long her daughter was on the waiting list, then she said the number of medications her daughter takes regularly. Then she started naming the number of medical diagnosis’ that has been placed on her daughter. And then she ended it with two powerful numbers, 47 and 52. She said “These are the numbers that represent me and my husband’s age.” She went on to talk about how she’s not getting younger and her daughter is getting older. She talked about her fears for her daughter’s future.
Next Meeting – OKC
Thursday, June 2, 2016Room C-47 (Basement)
1:30 pm
Sequoyah Building – Capitol Complex
Notes
DHS / DDS Waiting List Meeting
Tulsa, Oklahoma
Thursday – December 10, 2015
1:30 PM
Date of Application: February 2006
Attendees: 18
Represented in attendance:
8 – Parent or Family Member
4 – Self-Advocate (person with a disability)
1 – DHS/DDS
1 – OHCA (Health Care Authority)
2 – News Media
Representing those on the Waiting List – 9
First Time Attendees – 8
Locations represented Stillwater, Norman, Jenks, Owasso, Sand Springs, Oklahoma City, Collinsville
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Sooner SUCCESS, Oklahoma Developmental Disabilities Council
Attendees were answered: For those waiting or those working with families who are waiting, name one thing of great importance the person needs right now? Or what is the person waiting for?
| Immediate Need | Future Need | |
| Access to therapy | What if something happens to us? What happens to our child? | |
| Options for employment (more state funded employment slots | Who will care for them? | |
| Diapers/Incontinence supplies | Establish Special Needs Trust, finding staff | |
| Prescription medication over the Medicaid limit | ||
| Adult care for working parents | ||
| Care for my child when I need it (respite) | ||
| Financial support | ||
| In home help for adult w/DD (adult who is larger than parent and hurts himself and others) | ||
| Few Hours of care/Companionship per week so I can run errands | ||
Waiting List Breakdown by County
Next Meeting – Oklahoma City
Thursday, March 10, 2016
Sequoyah Building – Capitol Complex
Room C-47 (Basement)
1:30 pm
NOTES
DHS/ DDS Waiting List Meeting
Thursday, Sept. 10, 2015
1:30 PM
Date of Application: February 2006
Attendees: 38
Represented in attendance:
22 – Parent or Family Member
8 – Self-Advocate (person with a disability)
6 – DHS/DDS
1 – OHCA (Health Care Authority)
1 – Professional supporting individuals and families
Representing those on the Waiting List – 20
First Time Attendees – 16
Locations represented – Norman, Noble, Oklahoma City, Edmond, Stillwater, Ada, Arcadia, Mustang, Lawton, Yukon,
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Oklahoma Family Network, Sooner SUCCESS, PAC, Oklahoma Infant Transition Program, Oklahoma Developmental Disabilities Council, Goodwill, Family Support 360 Program,
Waiting List Breakdown by County
Lori Kann, Oklahoma Healthcare Authority
Lori announced that starting July 1, 2015, incontinent supplies, diapers, pull-ups, disposable briefs and wipes, will not be covered under SoonerCare for children under the age of 21. Oklahoma has established a vendor, People First Industries. The child requesting incontinent supplies would need to take a form to the doctor and have it filled out. Then it would need to be faxed to OPI to start the process. (flyer attached)
Next Meeting –
TULSA!Thursday, December 10, 20155th Floor Conference RoomTulsa, Oklahoma
1:30 pm
6128 E. 38th Street
Skyline East Building
Notes
DHS / DDS Waiting List Meeting
Tuesday – June 23, 2015
1:30 PM
Working application date: January 20, 2006
Attendees: 30
Represented in attendance:
18 – Parent or Family Member
4 – Self-Advocate (person with a disability)
7 – DHS/DDS
1 – OHCA (Health Care Authority)
Representing those on the Waiting List – 13
First Time Attendees – 9
Locations represented – Norman, Noble, Midwest City, Oklahoma City, Moore, Tulsa, Edmond
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Oklahoma Family Network, Project Special Courage, Dungarvin, Inc., Oklahoma Infant Transition Program
Introductions:
Answer one question: For those waiting or those working with families who are waiting, name one thing of great importance the person needs right now? Or what is the person waiting for? Responses are as follows:
| Need Now: | Need in the future: |
| After school childcare | Help with transition from high school to job or employment (four responded with this answer) |
| Weekend childcare | Support for Independent living |
| HTS services | Better life choices with support in community |
| Speech therapy | Internships, vocational training |
| Specialized life skills coaching | Opportunities and life choices for all family members |
| Safety training | Care for grandkids |
| Summer care | Security for children after death of primary caregivers |
| Educational/ job training | |
| Information and emotional support | |
| Extended School Year | |
| ABA therapy | |
| Diapers | |
| Internships, vocational training |
DHS Update – Ed Lake, DHS Director spoke about the dismal budget DHS is challenge with this year. He reported that with the increase in need and the decrease in the federal match, they are facing a $11.8M shortfall. He said in their budget the Pinnacle plan has an earmark of $15.9M. He also reported that for the past few years DHS has requested added funds to address the DDS Waiting. This is the first time in more than three years for the state legislature to not have funds allocated specifically to address those waiting. He said DHS has not come to a complete decision on how they will address the short fall, but some items on the table is a reduction in provider rates and a reduction in administrative cost and overhead.
***It was determined after this meeting that DHS will cut provider rates by a 3.5%***
Waiting List Update – JoAnne Goin, DDS Director, reported there are 7,132 Oklahomans on the DDS Waiting List. They are still working application date Jan. 20, 2006. They have completely spend the last appropriated $1M allocated from the state legislature from 2014 session. She reports they are only working emergency which typically comes from children placed in state custody of the child welfare system.
JoAnne also reported that at this time they only have on resident at the Southern Oklahoma Resource Center (state funded institution). She said this individual is currently working on a transition into the community.
Questions for JoAnne regarding the emergency movement to waivers: she said that when Child Welfare request waiver service or the child is usually on the waiting list they will move them to waivers. She also said there are times the child might be in the hospital and then transition to state custody, they will receive waiver. A parent asked about is there allotted slots for each waiver, and she said it is based on funds available.
Waiting List Breakdown by county
SoonerCare offering diapers, wipes and disposable briefs to children under 21 – Lori Kann, Member Services Manager, Oklahoma Health Care Authority: Lori brought some great and needed information to the Waiting List Meeting. This is offered to any child on SoonerCare that meets the medical necessity requirement. A child between the age of 4 and 20 can apply. Their doctor will need to fill out a prior authorization form, HCA-52. Then it will need to be sent to the state vendor, People First Industries (PFI) in Durant, OK. At that time, PFI will then begin the process to get authorization from the Oklahoma Health Care Authority. PFI may call the family to get more information or the doctor. Children could qualify for diapers or pull-ups along with wipers for personal hygiene care. Families who have questions are welcome to call People First Industries at 1-866-895-9956.
It was asked how outreach was made regarding the changes since SSI-DCP or waivers had been previously offering this type of support. Lori reported that OHCA did a targeted outreach to those already known to the system. They looked at and contacted all children receive incontinence supports through SSI-DCP or children’s IHSW. She said they plan to do outreach and possibly training to physicians across the state.
Someone else asked how long she felt prior authorization would take. Lori expects about 48 hours.
Family Questions & Comments:
One parent asked if there was a possible way for outreach is given to those on the Waiting List or receiving SoonerCare through TEFRA. It was said that people can receive information by connecting with the Facebook page of OK Parnters in Policymaking, or the OK TEFRA Families group if a person is on TEFRA or applying for TEFRA.
It was also discussed that the Oklahoma Disability Law Center can help families and individuals with noncriminal legal issues. Anything from Medicaid challenges to waiver or civil rights and the ADA.
Another family asked if there is a place where families and individuals can discuss “customer service” issues with any of the state funded program or services. It was said that no known place, meeting or gathering has been defined or described as this type of meeting.
Next Meeting – Oklahoma City
Thursday, September 10, 2015
Sequoyah Building – Capitol Complex
Room C-47 (Basement)
1:30 pm
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Notes
DHS / DDS Waiting List Meeting
Thursday – March 12, 2015
1:30 PM
Serving Application Date: January 20, 2006
Attendees: 26
Represented in attendance:
17 – Parent or Family Member
4 – Self-Advocate (person with a disability)
3 – DHS/DDS
2 – OHCA (Health Care Authority)
Representing those on the Waiting List – 14
First Time Attendees – 6
Locations represented – Norman, Kingfisher, Midwest City, Oklahoma City, Moore, Tulsa, Roland, Yukon, Edmond, Mustang, Blanchard
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, SoonerSUCCESS, Oklahoma Autism Network, Oklahoma Disability Law Center, Oklahoma Developmental Disabilities Council/Partners in Policymaking, Oklahoma Family Network, Oklahoma LEND,
DHS Update – Ed Lake, DHS Director, spoke about the state’s challenging budget, and how anticipated budget will not be what was when they submitted their budget to the state legislature several months ago. He mentioned that there will be no carryover as in years past to cover the increase in administrative needs for Child Welfare or even DDS. In addition to the concerns about the budget and even if they are level funded, but that doesn’t seem to be an expected reality, DHS/DDS is also challenged with the decrease of the federal match for Medicaid services, including the waivers. The change in the federal match will be a loss of about 7 million dollars, which will need to be covered by whatever budget is appropriated. Even with this dismal budget outlook, it’s important to note that DHS has changed the method of requesting annual appropriations to narrow their focus and justification to only a few programs in their agency. First on the list is Child Welfare and the Pinnacle plan, with the DDS Waiting list being second in priorities. Director Lake said they have requested an additional 4.6 million to directly impact the Waiting List.
Waiting List Update – JoAnne Goin, DDS Director, reiterated what Director Lake mentioned about the challenges DDS will be facing with the reduction from the federal match for Medicaid services. I asked if she feels this will impacted the provider rates and she said that is a valid concern.
She said there are only eight individuals still living at SORC (Southern Oklahoma Resource Center) and anticipates the full closer of the institution this year. She reported that NORCE was closed on November 17th of last year.
She said as of October 2014, they have utilized all the funds appropriated from last year’s legislative session. In FY 2014 DDS worked 547 applications from the waiting list. They have added 194 to HCBS Waivers and then from July to Oct, 2014 they worked an additional 152 application with adding 58 people to the HCBS waivers. They have 6-8 pending, which means they are still working through approval for waivers. When asked how many of the 547 “worked” for FY 2014 did not receive services due to not qualify for DDS Waivers due to lack of qualifying IQ score. It is reported that only 12 did not meet the Medicaid criteria which is about 2%. It was also reported that of the 547, 85 applicants declined and of those who declined 46 were due wanting to continue receiving the FSPS ($250 monthly payment).
JoAnne also wanted people to know that you can apply on-line for the DDS waivers. Here is the link: http://www.okdhs.org/programsandservices/dd/docs/areacontactinfo.htm Also, families are encouraged to update their contact information and add a second contact to their information. You can update at this link: https://surveys.okdhs.org/TakeSurvey.aspx?SurveyID=mlL2l58
Waiting List Breakdown_county_Jan 2015
Update on Governor’s Blue Ribbon Panel – I have an update on the Blue Ribbon Panel. The Panel plans to have their complete recommendations at the last meeting on March 27th. Some things that were discovered during the process of looking at non-waiver available services to people on the waiting list it was discovered the incontinence supports (diapers) can be available to children when medically necessary. The Governor’s office is working the OHCA to make this happen. The anticipated date of availability is July 2015. It was also discussed that there were other services that seemed to have a barrier to access, and the Governor’s office is working to streamline access, such as personal care for children which is based out of Aging Services.
Family Questions & Comments:
A father from rural Oklahoma asked why Oklahoma has not considered the Community First Option as our state Medicaid plan. There was a lot of conversation about this topic from this dad. He feels this will end the waiting list. I have looked into this a while back, and it does appear to be an expansion of the current Medicaid state plan but does allow for a 6% added enhanced rate for any newly added service to the state plan. He reports that there are other states looking at or moving to this Medicaid program. I think there is more need for discussion around this topic.
There was no other comments from any other family.
Next Meeting – Oklahoma City
***Tuesday, June 23, 2015
Sequoyah Building – Capitol Complex
Room C-47 (Basement)
1:30 pm
Notes
DHS / DDS Waiting List Meeting
Tulsa, Oklahoma
Thursday – December 11, 2014
1:30 PM
Serving Application Date: January 20, 2006
Attendees: 20
Represented in attendance:
8 – Parent or Family Member
1 – Self-Advocate (person with a disability)
3 – DHS/DDS
1 – OHCA (Health Care Authority) via telephone
1 – Oklahoma House of Representatives
7 – Agency supporting those with developmental disabilities in Oklahoma
Representing those on the Waiting List – 6
First Time Attendees – 13
Locations represented – Tulsa, Jenks, Broken Arrow, Oklahoma City, Norman, and Haskell
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, SoonerSUCCESS, ResCare, CAP Tulsa, Jenks Public Schools
Mark Jones, Director of Community Living and Support Services, talked about the budget request submitted to the Oklahoma Legislature. He said that DHS has reduced the number of priorities to seven. Where, in the past they could have over 20 priorities. He said the first priority on DHS list is to be able to fulfil the Pinnacle plan addressing the Foster Care system in Oklahoma. The DDS Waiting List is included in their top priorities. Mark continued to explain that DHS has request more than $4,000,000 to make a significant impact to the waiting list. He estimates that this funding could serve more than 400 people, with removal of more from the list.
JoAnne Goin, DDS Director, reported DDS is working application date January 20, 2006. The current number on the list is 7,012. Since 2012, they have worked 1,166 application from the waiting list, meaning they have removed 1,116 from the waiting list. She also reported that as of three weeks ago the Northern Oklahoma Resource Center in Enid is now closed. All residents have been transitioned to a community supported living situation. She added the at this time there were still 13 residents living at the Southern Oklahoma Resource Center in Pauls Valley.
JoAnne reported the appropriations for the Waiting list from the 2014 legislative session has been used as of October 2014. She explained that due to the amount of time on the waiting list, locating those who have waited the longest seems to be the greatest challenge. With that DDS has contracted with a “locator” service to help assist finding applicants when the typical means of using state service directors is not working.
She also reported that DDS has made a few changes to the “In-take” process when a person requests the waiver application. In-Take is not increasing referrals to community supports and services. JoAnne also mentioned the federal planning grant that was been awarded to Oklahoma called the “No Wrong Door”. This grant is an opportunity for developmental disability services and the aging supports division to create and plan to streamline the in-take process for each program. She is very excited about the potential of this planning grant. She also said that ADRC website/portal should be up and running in March or April 2015
JoAnne, also said that as of October 2014, DHS had hired a new Adult Protection Services director, Gail Welstein. She also discussed that this year the focus will be on improve and increase the use of the state funded employment services and DRS’ change in transition efforts for students with the employment first focus.
Waiting List Breakdown_Oct 6 2014
Lisa DeBolt, Parent & Tulsa County Coordinator, SoonerSUCCESS brought up a situation that seems to be happening more and more in the Tulsa area. Lisa brought another parent who she’s been supporting through SoonerSUCCESS. This mom’s son has graduated from high school and is in need of a day program so mom can continue working. All the programs this mom looked into, had no openings for DD waivers. After looking deeper into the situation in the Tulsa area this mom learned that many of the day programs for adults was designed for the aging adult. She only found four adult day programs who would accept an adult with developmental disabilities and who’s support level was not too high. She also learned the payment or reimbursement structure actually supported more aging adults than adults with developmental disabilities. It was explained to her that for a person with DD the day rate is $45 a day, and the rate for an aging adult is $60 a day. This explains the limited number of “slots” available for individuals with DD. This mom wanted to request equal funding no matter which program they are accesses the service through.
Family Questions & Comments: Another parent brought up a similar situation but in regards to after school programs for students with DD. She said in her area she is not able to find any program and this is challenging her family and her job as her son must be cared for in a safe environment. She would like DDS to help build the capacity in the communities to help meet this need of families.
One other mom brought up a challenge for her son who needs incontinent briefs to keep him clean. While her son was in toddler diapers, she was able to receive name brand diapers up to a size 4. While the name brand diapers to go a size 6 because the program that provides them, they are not able to access those sized. They are required to now use the state contract adult briefs which appear to be about three sizes too big. This mom said that when she put the new adult briefs on her son, her covered his abdomen up to his chest. She would like the SSI-DCP program to consider using toddler diapers up to the limit size they have available. I took a picture of the diapers to compare the difference in sized.
Next Meeting – Oklahoma City
Thursday, March 12, 2015
Sequoyah Building – Capitol Complex
Room C-47 (Basement)
1:30 pm
Notes
DHS / DDS Waiting List Meeting
Thursday – September 11, 2014
1:30 PM
Working Application January 2006
Attendees: 30
Represented in attendance:
13 – Parent or Family Member
1 – Self-Advocate (person with a disability)
1 – Governor’s Office
1 – Governor’s Blue Ribbon Panel Chair
7 – DHS/DDS
1 – OHCA (Health Care Authority)
1 – Department of Rehabilitative Services
4 – Agency supporting those with developmental disabilities in Oklahoma
1 – Gubernatorial Candidate staff
Representing those on the Waiting List – 8
First Time Attendees – 5
Locations represented – Norman, Noble, Oklahoma City, Mustang, Broken Bow, Duncan and Moore
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma LEND, SoonerSUCCESS, Oklahoma SibShops, Office of Disability Concerns, Putnam City Schools, Oklahoma Disability Law Center, Duncan Group Homes, Oklahoma Family Network, Oklahoma Developmental Disability Council
Waiting List Update – JoAnne Goin, DDS Director, discussed the number of people served because of the most recent legislative appropriations to address the waiting list. There were 130 added to waiver services. They are working application date January 2006 and will be working applications at a rate of about 30 a month until they use the full amount appropriated. Ms. Goin also discussed the closing of the two state run institutions, Northern Oklahoma Resource Center, Enid (NORCE) and Southern Oklahoma Resource Center in Pauls Valley, (SORC). They anticipate to have all of the residents living at NORCE moved by the end of the year and hope to have the last few at SORC moved within a few months. She reported that the transitions to the community have had a few hic-ups but are moving as projected.
Waiting List Breakdown_June 30 2014
Waiting List Breakdown_June 30 2014 with county
Family Questions & Comments
A provider from Duncan brought messages received by her agency over the past week or so:
- 55 year old man supported by a 90 year old mother who broke her hip
- 30 year old man who is supported by his mom who has stage 4 cancer. Hospice has been recommended by the mom’s doctor
- Mother who has a 17 year old son in an out of school residential school. The son will be turning 18 and graduating in December and she needs a residential placement when he comes home.
- An adult sibling called about her elderly mom and sister who has Down Syndrome currently lives in Missouri but will be moving back to Oklahoma so she can assist with care of the mom and sister. She needs information and her sister is not on the Waiting List.
A parent spoke about his 24 year old son who uses a wheelchair for mobility. He spoke about three issues affecting his son: 1) bath chair broke and SoonerCare has denied request to purchase a replacement. 2) His son needs new AFO (splints for ankles) and SoonerCare has denied coverage for these orthotics. 3) Dental coverage just to repair cavities
A mom from Canadian County spoke of her 25 year old daughter who requires constant care talked about being a single mom and trying to take care of her daughter and work to support them both. Her daughter is on adult SoonerCare and receives SSI. She had a difficult time talking about their issues and challenges due to periotic stops for crying. She did tell us about the high stress, challenges and cost to pay for her daughter’s prescription medication with the 6 prescription limitation SoonerCare has for adults. There was no offer of support or assistance given to this mom when she finished speaking.
Another parent from Broken Bow has a daughter who is seven years old daughter who has severe developmental and medical disabilities and challenges. This is a single living in a small house. They are a nurse and the daughter is on SoonerCare through the TEFRA qualification process. They are in extreme need for architectural modification so that she can request and use a Hoyer lift. The bathroom is too small for the lift to fit and so is the daughter’s bedroom.
One more issue brought up was the cost of the psychological examination that is cover by DDS for those applying for DDS, but for those applying for TEFRA this exam must be at the cost of the family. JoAnne Goin said that DDS pays their contracted psychologist $350 per exam. It was suggested that OHCA contract with psychologist for the same purpose regardless of who pays for the service.
All the issues mentioned by families, except one, were addressed by JoAnne Goin, DDS, and Lori Kann, OHCA. I would like to thank both of you for offering to help these families and following up with them after the meeting.
Next Meeting – Tulsa!
Thursday, December 11, 2014 @ 1:30PM
Skyline East Building – 3rd Floor Conference Room
6128 E. 38th Street
Tulsa, Oklahoma
Notes
DHS / DDS Waiting List Meeting
June 12, 2014
1:30 PM
Working Application Date: Oct. 2005
Attendees: 29
Represented in attendance:
8 – Parent or Family Member
6 – Self-Advocate (person with a disability)
6 – DHS/DDS
2 – OHCA (Health Care Authority)
4 – Agency supporting those with developmental disabilities in Oklahoma
2 – Oklahoma House of Representatives
Representing those on the Waiting List – 9
First Time Attendees – 9
Locations represented – Mustang, Anadarko, Oklahoma City, Del City, Norman, Midwest City, Moore, Sand Springs
Community agencies, programs or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma LEND, SoonerSUCCESS, Phoenix Residential Services, Apex Provider Agency, and Dynasty Care Services
- DHS Update – Ed Lake, DHS Director – It was a tough year for the Oklahoma Legislature because of the expected budget shortfall, but Oklahoma DHS fared well. Director Lake said DHS had no reductions and was in fact increased to help meet the Pinnacle Plan. The governor and the Oklahoma legislature approved an additional $1 million to work the waiting list. Director Lake reports it was a good year for the DHS budget all together.
- A parent asked Director Lake if the full amount needed to dissolve the waiting list was requested from the legislature this year. Director Lake reported that they did not request the full amount needed understanding the current climate of Oklahoma’s budget, but they do request a certain amount which has for the past three session been reduced to the $1million they have actually received.
- Waiting List Update – Marie Moore, DDS Deputy Director & Debbie Pumphrey, DDS Deputy Director – It was reported that they are working application date Oct. 2005. They have moved 268 people to waivers over the past two years. They currently have 111 cases pending. Until the past two months, when the budget was undecided, they were pulling 50 cases a month from the waiting list, to “work”. When the budget discussion started and they were not sure if they would actually receive the million dollars they reduced the number to 30 a month. With this new appropriation, they will go back to pulling 50-60 cases a month to be ‘worked’. Of the cases removed from the waiting list, 60-75% have been closed due to inability to locate or they have moved out of state, 12% have declined for different reasons, i.e. continuing with the Family Support Subsidy, no longer wanted service, or unknown. It was reported that less than 4% of those removed from the waiting list did not qualify due to not meeting DDS or Medicaid eligibility. They also reported that there were about 120 individuals placed on waivers in the past year due to emergency situations. Most of those emergencies were identified due to the state taking custody of the person. When asked the number of those coming off the waiting list who were children versus adult, it was reported that about 1/3 were children and the rest adults. When asked how many qualify for Community Waiver instead of the In-Home Supports waiver, it was reported that 15% will receive the Community supports waiver.
Waiting List Breakdown_March 31 2014
Waiting List Breakdown by county March 2014
- State Funded Employment Services – Regina Chase, DDS spoke about transition to work services. Regina said that transition to employment is usually provided from high school by the Oklahoma Department of Education (OSDE) and the Department of Rehabilitative (DRS) services. When they are not able to provide the employment services, DDS will step in and play a role. If there is an IEP in place for the student and employment training is part the IEP then DDS will not be needed because the responsibility lies with OSDE and DRS. When those options are exhausted or when the person needing employment services is out of school, DDS has a program to support individuals with developmental disabilities to become employed. She explained that the DHS/DDS Employment Services for those ON the waiting list, are state funded services and CAN be accessed while waiting for waiver services. If a person is interested in employment they do NOT have to wait for their name to come to the top of the list. There are two types of employment services the person can receive, Community Integrated Employment (CIE) and Sheltered Workshops. Community Integrated Employment – Job placement, training and support by a certified job coach in community settings such as local business (individual and group)Once a person has been approved for DDS Employment Services you will need to choose a provider depending on the service that was approved, Community Integrated Employment or Shelter workshops. List of Shelter Workshop Providers List of Community Integrated Employment Providers
- For more information contact Regina Chace, Programs Supervisor, Employment/Adult Day Servicesregina.chase@okdhs.org or (405) 521-4973.
- Sheltered Workshop – is a segregated employment setting and is paid work and training, it includes contract work and volunteer work.
- In order to apply for DDS Employment Services, you will need to call your area DDS office. Apply by clicking HERE. Please NOTE – you need to tell the “Intake” operator that you want to apply for the DDS Employment Service AND the DDS Waiver, if you are interested. You must know these are two different requests. If you only want to apply for the employment services, make sure to explain that, too.
- Family Questions & Comments
- There was much discussion following the talk about DDS Employment services regarding the lack of information to families and about what employment looks for in students with disabilities. Regina said that her staff has made a concerted effort to educate local teachers about the state employment program in hopes of adding to those who use this program. It was also suggested that they follow up with those areas to see if that kind of awareness improves the number of students accessing that program. It was also discussed that it should be expanded across the state to assure that all students and teachers understand the availability of this program.
- It was also discussed that this kind of information needs to be provided to parents way before it’s time to graduate. Families don’t know or understand how a person with developmental disabilities will be able to be employed and be able to work. This information and supports need to be explained in elementary and middle school to assure that families have a vision for their child’s future.
- One parent also discussed her challenges with accessing respite while her child is receiving Family Support Subsidy. She was able to make a connection with a few other families and professionals who plan to help her navigate the situation. She also mentioned that when she tried to apply for State Funded Personal Care she was told that because she’s “abled body” her daughter would not qualify. She was also connected with a parent who is going to help her navigate that process because that is not how that service is determined. The service is determined by the needs of the person with disabilities, not the parent. Also, please note, this is a single mom attempting to receive some assistance while her daughter waits.
- Next MeetingSequoyah Building, Capitol Complex Room C-47
- Thursday, September 11, 2014 @ 1:30PM
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Agenda
DHS / DDS Waiting List Meeting
Oklahoma State Capitol Complex
Sequoyah Memorial Office Building C-47
Thursday – March 13, 2014
1:30 PM
- Welcome
- Introductions
- The is a time to go around the room and give your name, where you’re from and your interest in the waiting list or DDS services, i.e. family member, waiting for services, receiving services, agency representing.
- DHS Update – Ed Lake, DHS Director
- Waiting List Update – JoAnne Goin, DDS Director Waiting List Breakdown
- State Personal Care – Kelli Davidson, DHS Medicaid – Aging
- Family Questions & Comments
- Developmental Disability Awareness Day – State Capitol South StepsThursday, April 17, 2014Visit your legislators before or after (call and make an appointment)
T-shirt order http://villagescreenprint.com/dda_201 (deadline to order April 8th)
Rally – 10:00 AM
“Hear Me Roar”
Oklahoma DDSD Waiting List Meeting 