Working Application Date July 1, 2006
Attendees: 57 (90 views on Facebook Live)
Represented in attendance:
19 – Parent or Family Member
5 – Self-Advocate (person with a disability)
8 – DHS/DDS
4 – OHCA (Health Care Authority)
8 – State House of Representative and Candidates HD 20, 90, 41, 45, 28, 94,
4 – State Senate Candidates: SD 30, 2, 20, 16
4 – Community Partners
7 – College Students
Representing those on the Waiting List – 16
First Time Attendees – 10
Locations represented – Oklahoma City, McAlester, Moore, Noble, Newcastle, Tulsa, Arcadia, Edmond, Norman, Midwest City, Piedmont, Wellston, Del City, Mustang,
Community agencies, programs, or organizations represented: Center for Learning and Leadership/OK UCEDD, Oklahoma Disability Law Center, Sooner SUCCESS, Oklahoma Family Network, Oklahoma Developmental Disability Council, TARC, Foundation for the Disabled, OCCY, OKLEND, Oklahoma Community Providers Association,
Mark Jones opened the meeting and welcomed everyone.
Wanda went over the ground rules.
Introductions were made around the room.
Representative Jon Echols
Update on the Wait List Caucus. This is a bi-partisan (co-chaired by Republican Jon Echols and Democrat Cyndi Munson) developed to address the wait list. In the beginning over 70 legislators signed up to participate but only those who showed up to the table and worked remain on the roster of the caucus. There are currently 14 working members. We want to discover: What do families need? What can we do?
Echols stated he gets very emotional by the WL as it personally affects his family as his niece is on the WL. This is a true partnership on both side and Echols stated we made a dent last year due to the bi-partisan nature it was a win. He is proud to make a dent in the list this past year. He reminded all families that you are not a number, you are the reason they are there at the Capitol each day and to be encouraged you are making a difference. Thank you to Wanda, Erin, and Roseann for helping to create the caucus. Echols stated “I can’t fix the waiting list but WE can, without an open mind this would not have happened”
DDS Update – Beth Scrutchins, DDS Director
Beth gave an update on current cases. From the 2 million appropriated 361 cases were pulled. Of those 244 are pending/processing, 112 are closed of these closed cases 20 declined services, 2 declined with FSAP continuation, 50 unable to locate, 4 not eligible, 6 has passed away, 20 moved out of state. Beth said that the 2 Million will serve approximately 200 people. So far 25 of these cases have been certified, 22 on IHSW and 3 on CW.
They began pulling these cases the end of May and hope to be done by October.
DDS will continue their project of updating contact information of people on the list. They have sent out 8,000 letters in multiple rounds to the entire WL. They have hired an additional 6 contractors over these past months to address the tracking down and updating information of the WL. They are close to 40% complete. There are 3,850 that have not been returned to DDS and haven’t been updated. These contractors will continue finding new addresses and using different cross check across agencies and using a high tech search that they have access to, it just takes time. Beth said DDS takes this very seriously and they are doing everything they can to find all the people on the list. She said they hope to be finished by October. Wanda asked if they could possibly wait until November to coincide with the dates of the stakeholder meetings across the state. If you haven’t updated your information then they ask that you please do this either online or by calling 405-521-6255. Lora Kann, OHCA was also there with her team to update information at the WL meeting. Wanda reminded families that if they move a lot they can add a second contact person to the list that might have a permanent address.
A family asked the question regarding the Family Support Assistance Payment and if that was better then services. Wanda responded that from one mom to another mom, that payment goes away at the age of 18 and services are for the person’s life so to keep heading to DDS.
Beth continued to give an update on the new Connections Waiver. Children in custody with high behavior needs can’t find a proper placement we need a continuum of care for these kids. We are beginning to develop a plan meeting next week with providers and staff to see what other states are doing. We will repurpose Laura Dester Shelter to a facility for kids with Mental Health needs who also have IDD.
An update was given on the creation of a respite waiver. The Legislature gave $100,000 to the development of a waiver for families. DDS is going across the state to hold stakeholder meetings to find out from families what they want and what the need. Beth said they need families, community members, providers, and everyone to come to the table on this. It is not just a family issue it is a community issue. Stakeholder meeting are listed on a handout and will also be blasted on social media, please share and tell everyone!
Wanda gave an update on the Waiting List and what the color codes and charts mean.
Current date of application is July 2006. She explained how the colors connect to ages and tell a story, both of the person waiting and their caregivers. We can’t know everyone on the list but with this information we can know their stories. The white section, these are kids under 3, they aren’t even eligible yet. Imagine just having a baby and having to process a disability or health crisis and then having to process that on top of it all you need to figure out how to get on this list that can help you in 12 years. The pink section tells the story of families getting by mostly due to school. Parents might still be able to work if they can find care but some cannot, and hopefully they work for the school or have a flexible job because they will have to work around school hours. Once they hit the green section all of that will change. Look at the green shades this population probably had a parent quite work to care for them at that age, on the other end of the green shades these people probably have aging care givers how will they continue to care for their loved ones? Do they have support in place? Will these be emergency cases? Our yellow section is our senior citizens. How are they doing it? Why are they still waiting?
Wanda “ The weight is on families, we will do EVERYTHING we can to support our kids but we can’t do it all”
The grey sheet Waiting List by County is one of the best, it breaks the wait down by county. This is a great tool for all you legislatures that are here today. Who is in your county? I guarantee there are more that don’t know about the list or have given up hope. We can’t let that happen. Thank you for being here and becoming educated, now go educate the rest of them!
History of the Waiting List compared to the number receiving services
There was some good discussion and questions regarding how to disseminate information , possible ideas are through schools, churches, doctor education.
Next Meeting
Thursday, December 13, 2018
1:30 pm
Sequoyah Building Room C-47
2400 N. Lincoln Blvd.
Oklahoma City, OK