State Council for Persons with Disabilities

STATE COUNCIL FOR PERSONS WITH DISABILITIES’

BRAIN INJURY COMMITTEE

May 4, 2015 – 2:00 PM

Smyrna Rest Area, Smyrna

PRESENT: Ann Phillips, Chair-Parent/Family Voices; Brian Hartman, Vice-Chair; Carol Barnett, DSAAPD; Andrew Burdan, BIAD; Tammy Clifton, DVR; Debbie Dunlap, Parent/BIAD; Dr. Katie Freeman, DSCYF/DPBHS; Jody Hougentogler, Parent; Chris Long, DHSS/DDDS; Sharon Lyons, BIAD; Andrea Rinehart, DSAAPD; Ron Sarg, DE Commission of Veterans Affairs (DCVA); Beverly Weigand, DMMA; Sybil White (for Wendy Strauss); Lucinda Williams, BIAD; Maria Zakula, BIAD and Kyle Hodges, Staff.

ABSENT: Ray Brouillette, Easter Seals; Felicia Connor, Open Door, Inc.; Kristen Cosden, DDC; Dr. Jane Crowley, A.I. duPont Hospital; William Farley, DE Commission of Veterans Affairs (DCVA); Tracey Landmann, BIAD; Gigi Law, Parent; Dale Matusevich, DOE; Cindy Mercer, DSAAPD; Carolyn Morris, DSAAPD; Liz Schantz, Advocate; Dyanne Simpson, DSAMH; Tiffany Stewart, Point of Hope; Leah Woodall, DPH.

CALL TO ORDER:

Ann called the meeting to order at 2:05 pm. Everyone introduced themselves.

ADDITIONS TO THE AGENDA:

· Cognitive Rehabilitation

APPROVAL OF MINUTES:

Motion was made, seconded and approved to accept the March 2, 2015 minutes as submitted.

BUSINESS

TBI Assessments

Not recorded

Cognitive Rehabilitation

(Not recorded)

Brain Injury Fund

There was discussion about other states that have good examples of Brain Injury Trust Funds, which are Kentucky, Colorado, New Mexico, Louisiana and Georgia. The Brain Injury Trust Fund subcommittee has found that they have to do a lot of follow-up to get additional information in order to make a determination regarding the Trust Fund applications received. In order to avoid further delay, the following additions to the Application were suggested for consideration:

· Proof of residency.

· The person applying for funds sign off on a medical authorization.

· Define clearly what is not covered.

· Funds are not distributed based on financial need, but whether insurance covers your request.

· Eligibility Requirement (based on Louisiana’s Application).

Comment was made about getting funds from collected driving fees. Brian commented that we would be competing with Courts and Law Enforcement. Kyle spoke about the initial draft legislation included collecting monies from moving violations, but this did not move forward. He added that we need to determine the best time to redo the legislation. Kyle added that we are not spending the money that we currently have. He reviewed the money available. Ann spoke about funding for people to attend the Point of Hope program and the need for clarification if Medicaid covers this service. Kyle added that we have funded several people to attend this program; he has heard that one of the MCOs is providing funding and this needs to be clarified. Kyle will follow-up with Steve Groff and Lisa Zimmerman regarding clarification of what gets funded or not funded through Medicaid. Beverly suggested contacting the MCOs and noted that it is complicated. Kyle said there is no longer representation from the MCOs on this Committee. Beverly will work with Kathleen Dougherty to get contact information on the MCOs and Kyle will follow-up. Jody asked about home modifications. Kyle commented that we had several requests, but the amounts were too large for the money we have to spend.

Ron spoke about discussions on proposed federal legislation regarding means testing. Ann commented that a lot of people do not know if they are in the Plus program or not. Lucinda will send some ideas she has before her departure from BIAD. Brian asked if anything needs to be done to facilitate the budgeting for the Fund. Kyle will follow up with Representative Heffernan. Ann suggested having recipients of the Fund give testimony to the Legislature. Kyle added that this had been discussed if the legislation had moved forward, but is unsure where it would fit in now since JFC is done for the year. Andrew asked how information on the Trust Fund was disseminated to people. Kyle commented that case managers from DSAAPD and Medicaid referred most of the people. He added that there has not been a public blitz, but a press release or public service announcement could be considered. Kyle noted that any funds not utilized could be rolled over. Brian stated that we should have the new criteria, what will be included or excluded, and limitations of the amount a person can receive. Kyle commented that having a waiting list would show a need for future funding. Carol commented that DSAAPD could give out respite vouchers to caregivers for them to receive a break which would benefit the person with a brain injury and their family. She added that they could provide statistics on usage and this is subcontracted with Easter Seals. Carol added that they currently have a waiting list. Kyle asked for additional information and said that it would have to be for people with brain injury. Comment was made that the Trust Fund Application needs to be filled out by a caseworker or representative. Kyle noted that there is a big need for respite services. Ann spoke about respite care that is covered, which is limited to the Diamond State Plus Program. Comments was made that other programs provide some respite services.

Review of Retreat Goals

Ann referred to the Summary of the Priorities, Goals and Objectives derived from the Retreat held last June (handout). Kyle stated that it would be a good idea to review the goals. He referenced one of the Priorities: Prove technical assistance to educate public and private policymakers. He said some of this work is being done with the assessments, work on concussions, TBI Fund issues, etc. He stated that some other areas need to be addressed, for example, data (which would require a system change). He asked how the group wanted to move forward in specific areas. He noted that DSAAPD has given updates on services they provide. He said that there had been previous discussion about having presentations from other agencies, for example, DSAMH and DDDS. Ann added that it would be good to review and if members thought something we should be working on, let us know. Kyle asked for thoughts or suggestions.

Brian asked about the status of legislation being promoted to expand concussion training beyond youth sports under DIAA. Kyle commented that Jane Crowley, Pat Redmond, Representative Heffernan and he met to discuss this legislation. Representative Heffernan wanted to include this with legislation that would also require criminal background checks. This legislation has been put on hold, but she would still like to move forward with legislation expanding the concussion training for coaches beyond youth sports under DIAA to other groups, for example, recreational leagues. Kyle said that he, Jane and Pat are meeting soon to develop an initial draft bill. He added that Brian will share it with the Committee for their input.

Ann brought up the Brain Injury Registry and the difficulty in getting good data without the Registry. Ron commented that the Veterans Commission had recommended the establishment of a TBI Registry Program in Delaware to the Joint Military Affairs Committee at Legislation Hall. He explained that once we have a target number, then a target fund can be established, along with programs. He added that copies of the recommendations presented were distributed to all the legislators. Ron clarified that this accounting would include all TBIs, not just for the military. He noted that existing legislation only pertains to the DIAA to make parents aware of concussions relating to sports injury during practice and games. Ron said there was concern expressed about confidentiality. He explained to them that the goal was to look at data, not patient records. Ann spoke about a problem with data collection if the primary diagnosis is not TBI, then it is missed which creates issues later. Ron commented that it can be noted as an initial complaint, not diagnosis. He commented that we need to find other legislators who are interested in this issue.

A question was raised if other states do not have a Registry. Kyle spoke about discussion in 2007 with the Medicaid Director who did an analysis of states who had a registry or surveillance system. He said that he could try to get this information. Ron commented that an epidemiologist is not needed for reporting statistics, but would be needed for analysis of the data collected. Ann said that the epidemiologist hired by Public Health last year had a focus on Low Birth Weight because the position was funded by Maternal & Child Health. It was noted that some statistics can be obtained from Christiana Care, but would not be reliable because it only shows the major reason for the ER visit and not the secondary reason which could be a brain injury. More research will have to be done on what states have a registry. After this information is obtained, Kyle will meet with Representative Heffernan to start the discussion about establishing a Registry. Comment was made that more funding would be available if there is a Registry. Kyle stated that if anyone had agenda items for meetings to contact him. The Priorities, Goals and Objectives will be discussed further at the next meeting after everyone has time to review the handout more thoroughly. Everyone was in agreement about this.

Legislative Update

Kyle briefly spoke about the concussion legislation mentioned earlier. He spoke about House Bill 110 which creates some amendments to the Personal Attendant Services Program. Kyle stated that a working group which consisted of representation from DSAAPD, DDDS, DSAMH and DMMA to develop consensus legislation. Kyle said that the original intent was to serve all people with disabilities, but is broken down that a person needs a basic service in order to get an ancillary service. He added that most of the basic services are for those with physical disabilities. He stated that the PAS program serves about 75-80 people at a time. The consumer satisfaction surveys from JEVS and Easter Seals (who are the contractors) are always good. The basic and ancillary criteria was made into one service to all persons with disabilities could be served. This amendment also allowed DHSS to authorize background checks. Kyle stated that he hoped this would move through the legislative process by the end of the legislative year.

Brian spoke about the Source of Income legislation. He said that a decision was made to remove vouchers as a source of income. He said if the bill passes, landlords would not be allowed to deny housing based on source of income, but would not be required to participate in voucher assistance type of programs. He said that this legislation would protect 200,000 people in Delaware who receive Social Security; it would also protect those receiving veteran subsidies. Ron commented that there are 90,000 veterans in Delaware and they endorsed this legislation. Kyle said that a draft bill has been developed but not introduced which includes vouchers as a source of income. This draft bill is currently being reviewed by groups who opposed last year’s bill. Kyle asked if anyone had questions. Ron spoke about a strong movement at the State level regarding the Governor’s initiative to end homelessness for veterans; this will then be extended to the general population. He said that the information learned in eliminating veteran homelessness can then be used across the board.

Other Business

Carol spoke about several upcoming events. There will be two “Fearless Caregiver” conferences; one is tomorrow in Georgetown for Kent & Sussex and the other is at the Embassy Suites in Newark on Thursday. Carol said that registrations are still being accepted. Carol spoke about a Respite Summit on May 27th at the Duncan Center in Dover. The summit’s intention is to help plan and shape how Delaware approaches respite care by starting the process of developing a respite sustainability plan.

Carol spoke about the Delaware Division of Libraries system in disseminating information. She gave an example about a listserv that is free and which information goes out to 250 agencies. Carol commented that it is a great way to get the word out. They also have online LibGuides with bibliographies on different topics; they did one for DSAAPD on caregiving. Carol stated that there is a town meeting on Thursday, June 4th held at Delaware State University; they are looking for brainstormers regarding the directions that libraries should be going. Carol added that there is a lot of potential in utilizing the Delaware Libraries.

Carol spoke about an Emergency Preparedness event in September to be held at the Delaware Agricultural Museum in Dover. She added that it is a large event with lots of information for people with disabilities. Carol had flyers with her on these events if anyone wanted them. She also said that she could be contacted directly if anyone would like copies of the new DSAAPD Guides for Services.

Carol introduced Andrea Rinehart (DSAAPD). Andrea will be managing the Senior Medicare Patrol. This program educates people receiving Medicare regarding recognizing fraud and reporting it. This is a cost savings program and Andrea will be visiting many groups, including focusing on younger people who receive Medicare. Ann commented that Dual Eligibles will be on the agenda for the June SCPD meeting. Kyle added that DMMA representatives will be invited to discuss issues.

BIAD Report

none

OTHER BUSINESS

none

ANNOUNCEMENTS

Lucinda is leaving BIAD in May. Lucinda expects a smooth transition with the new Director.

Adjournment

The meeting adjourned at 3:30 pm. The full Committee will not be meeting on Monday, June 1, 2015. Instead there will be an assessment meeting. Brian questioned the July 6th scheduled meeting which is near the 4th of July holiday. Kyle said that he would poll people a couple of weeks before to get their input. The TBI Fund group met after this meeting.

Respectively submitted,

Jo Singles

SCPD Administrative Specialist

S:bic/May15min

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