STATE COUNCIL FOR PERSONS WITH DISABILITIES’

BRAIN INJURY COMMITTEE

August 3, 2015 – 2:00 PM

Smyrna State Service Center, Smyrna

PRESENT: Ann Phillips, Chair-Parent/Family Voices; Brian Hartman, Vice-Chair/DLP; Ray Brouillette, Easter Seals; Kristen Cosden, DDC; Dr. Jane Crowley, A.I. duPont Hospital; Debbie Dunlap, Parent/BIAD; Nicol Joseph, Highmark Health Options; Chris Long, DHSS/DDDS (via phone); Dale Matusevich, DOE; Carol Morris, DSAAPD; W. Lenora Reynolds, United Healthcare Community Plan of Delaware; Ron Sarg, DE Commission of Veterans Affairs (DCVA); Sybil White (for Wendy Strauss); Kyle Hodges, Staff (via phone) and Jo Singles, Support Staff.

ABSENT: Carol Barnett, DSAAPD; Andrew Burdan, BIAD; Jason Carpenter, BIAD Tammy Clifton, DVR; Felicia Connor, Open Door, Inc.; William Farley, DE Commission of Veterans Affairs (DCVA); Jody Hougentogler, Parent; Tracey Landmann, BIAD; Gigi Law, Parent; Sharon Lyons, BIAD; Andrea Rinehart, DSAAPD; Cindy Mercer, DSAAPD; Dyanne Simpson, DSAMH; Tiffany Stewart, Point of Hope; Beverly Weigand, DMMA; Leah Woodall, DPH; and Maria Zakula, BIAD.

Guests: Devina Kumar – University of Delaware

Dr. Cole Galloway – University of Delaware

Dr. Jonathan Bennett – Nemours

Christine Briley - Nemours

CALL TO ORDER:

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

ADDITIONS TO THE AGENDA:

None

APPROVAL OF MINUTES:

Motion was made, seconded and approved to accept the May 4, 2015 minutes as submitted.

BUSINESS

Established Status Epilepticus Treatment Trial

Dr. Bennett provided a PowerPoint presentation about ESETT (Established Status Epilepticus Treatment Trial). He explained that Status Epilepticus (SE) is defined as a seizure or recurrent seizures lasting longer than five minutes without stopping or waking up. A person whose seizure does not stop after receiving a full dose of medicine to make it stop is considered to have Established Status Epilepticus (ESE). The purpose of the study is to find out which of three commonly used medicines (phenoyton, valproic acid and levetiracetam) given in the emergency department for ESE is safer and more effective. He stated that Nemours (2+ to 18 years of age) is involved. He said that Christiana Hospital (for anyone 2+ years of age, including children & adults) and Crozer Medical Center are hoping to be involved, along with 39 other hospitals nationwide. Dr. Bennett distributed two handouts: an informational brochure on the study and an ESETT Community Consultation Survey. He asked Committee members to fill out the survey during the meeting or it could be completed online. He reviewed the details about the study which will begin in the fall. Included in the study:

·  Any patient who is 2 years or older with an active recurrent or ongoing seizure lasting longer than five minutes, and

·  Has already received an adequate dose of benzodiazepine in the past 5-30 minutes to make the seizure stop could be enrolled.

Dr. Bennett explained the benefits and risks. He explained how this study is different from other studies. All patients will be enrolled in the study without his/her legal representative’s consent. This is called “Exception from Informed Consent (EFIC). This is due to the fact that a seizure that will not stop on its own must be treated quickly, there will not be enough time to locate and talk to the person’s legal representative about the study. Once located or the patient wakes up, they will be told about the study and asked to give their permission to continue in the study. The U.S. Food & Drug Administration (FDA) has created a set of special rules called EFIC. The results of the study will be disseminated in a public manner. Experts will be overseeing the study throughout. If the study is show to have a dilatory effect or it is shown early on that one medication is clearly more helpful, the study will be stopped early. If someone declines to be in the study, they will wear a Medic Alert Opt Out bracelet for the duration of the study (approximately 5 years). These folks will receive the standard medical treatment provided for established status epilepticus at the hospital in their community. Brian asked a few questions about the medicines to be given and the dosage. Dr. Bennett explained how it would work. Carol asked if the hospitals will carry all three medicines and how the determination will be made on which drug to be given. Dr. Bennett explained how the process would work. Ann asked for clarification regarding someone who is already on a seizure medication. Brian asked about contraindications with other medications the person may be taking. Dr. Bennett stated that those folks cannot be in the study. Debbie asked who is heading the study. Dr. Bennett stated that the principal investigator for the study is someone at the University of Virginia and the pediatric investigator is someone from the Children’s National Medical Center in Washington, DC. They expect about 700 participants and Nemours expects about 3-4 patients a year. Dr. Bennett thanked everyone for the great comments. He collected the completed surveys and said they could also be completed online. He added that if anyone had additional comments or questions, he can be reached at (302) 651-4900 or email: . Ann thanked Dr. Bennett for his presentation.

Immersive Environment to Promote Recovery After TBI

Ann introduced Devina Kumar and Dr. Cole Galloway. Devina provided a PowerPoint presentation and distributed a copies. Part of the PowerPoint presentation showed a video where Dr. Galloway speaks about creating a harness system that could be rigged up on the ceiling of a small kiosk, giving someone with Traumatic Brain Injury enough support to be fully mobile. A Go Baby Go Cafe opened and Anne Dunlap’s (user of the harness system) new physical therapy regiment involved scooping ice cream, making coffee and taking cash at the pop-up store’s register. There is nothing going on in rehab like this. It can take a person from post injury to a career.

Devina reviewed statistics from CDC (Centers for Disease Control & Prevention):

·  At least 2.4 million emergency visits, hospitalization and deaths in US.

·  Falls are the most common cause for 0-4 years and above 65 years. MVA (motor vehicle accidents) most common cause in young adults 15-24 years.

·  Estimated economic cost $76.5 billion. Fatal and severe TBI (Traumatic Brain Injury) accounts approximately 90% of total TBI costs. Also, has a huge impact on the family.

Devina reviewed Health Impairments with TBI and Continuum of Care. She spoke about the Road to Recovery in Moderate-Severe TBI using the traditional approach. She spoke about statistics from a study done in 2014 that 2 out of 10 people die after five years and four out of 10 show a decline in functioning in recovery 1-2 years post injury. The range of employment is from 12% to 70%. She thinks the Go Baby Go Café (GBG) model can bridge this gap. The purpose of the study: Rehabilitation for neurologic patient can be performed in an “Immersive Environment” where various impairments are addressed all at once. GBG café is approximately 10’x10’ structure/kiosk), in a safe and challenging environment, and in partnership with commercial business and research lab. Devina reviewed the case description in detail and the Study Design, including Outcome Measures and Questionnaires at baseline, at the end of one month and then again after two months. Dr. Galloway commented that this is a partnership with U/D Creamery and is not a simulated business. He added that the space has grown into a 15’x 15’ structure. The GBG Café serves breakfast, lunch, snacks and ice cream.

Devina explained the Intervention, reviewing the job profile and weekly goals. A video was shown which showed how Anne worked in the café using the harness. Ann asked how long it took to become acclimated. Devina explained about four sessions. Dr. Galloway spoke about the increased speed over the two months. Setting Goals included: Balance and Speed, Cognition & Speech and Manual Dexterity. Results for Measure for hand function evaluation: 24% improvement in the right hand and 35.4% in the left hand. Measure of Gait Speed: Self selected walking speed, including faster by 42% at 1 month and faster by 55% at 2 months. Overall, increase in her self selected walking speed from 0.038m/s to 0.07 m/s (meter speed). Her fastest walking speed, including improvement of 21-44% as compared to baseline, with a range of 0.34 m/s to 0.05 m/s. More information can be found on the following website:

http://nationswell.com/cole-galloway-harness-system-enter-workforce/#ixzz3iRAdLT83.

Brain Injury Fund Update

Kyle spoke about the $50,000 given this year and we have $25,000 from last year, so we have about $75,000. He wants to spread the word and can resend the electronic version of the application if needed. He said that 34 applications were received at the end of June. Out of the total applications received during the last two years, 11 had been denied, 5-6 were still open and 15 had been approved with funding provided. The funding has been used for ramps, bathroom modifications, camp fees, base services, driver rehab evaluations, neuro-psy evaluations, assistive technology, and assistance with bills payment/co-pays for medical and behavioral health services. Kyle stated that the working group has been meeting to review applications.

TBI Assessment Update

Kyle said that the working group met in mid-June to determine which Assessment to recommend to DMMA folks for use with brain injury survivors and to look at cognitive and behavioral deficit. He said that the working group reviewed assessments from Colorado, Mexico, Kentucky, and Mayo-Portland and decided to recommend the Mayo-Portland Assessment. Kyle emailed DMMA in July with this recommendation, along with supporting documentation. DMMA is reviewing the documents sent in July and is waiting for DMMA’s feedback and schedule a meeting. He followed up with them today on the status of this.

BIAD Report

Jane spoke about the upcoming Crab Feast on August 22, 2015 at Leipsic Fire Hall. She said that this is a major fundraiser for BIAD. She would like to see increased attendance from the provider community to show commitment to survivors and their families and support to the needs of BIAD.

Jan spoke about the ongoing planning for the Annual Conference in March. She asked for ideas for speakers or topics. She added that it would be beneficial to see increased provider attendance. Ann added that letting people know about what services are here in Delaware would be a helpful topic. Suggestions can be sent to Kyle and he will forward to the planning group. Jane spoke about information known about youth survivors of brain injury, but little is known on adults survivors of brain injury because there has not been service delivery in Delaware before HealthSouth. Jane offered to send flyers about the conference to providers attending today’s meeting to distribute to increase attendance from the adult survivor community. Kristin suggested that Anne Dunlap be a speaker. Debbie spoke about the issues Anne would have in the question & answer segment. Dale suggested that he has seen a similar situation and the parents of the survivor assistance with this and it went smoothly. Debbie added that one of Anne’s Personal Attendants could assist with this.

Jane spoke about a group called “Gals That Give”. She said that one she attended had over 200 people in attendance. She said that they hold frequent fundraiser activities and choose a different recipient each time.

OTHER BUSINESS

None

ANNOUNCEMENTS

Jane spoke about an upcoming respite opportunity sponsored by the BIAD in partnership with Easter Seals on August 28-30. Ann added that there are only 15 slots for this so applications need to be received as soon as possible. Copies can be obtained from her or BIAD. It will be held at Camp Fairlee Manor in Chestertown, Maryland. Ray added that much of the camp has been expanded and renovated. Ann added that there is no cost for participants and transportation may be provided.

Adjournment

The meeting adjourned at 3:55 pm. Kyle will notify everyone if there will be a meeting in September since all the Mondays during that month were not good meeting dates. The next scheduled meeting is October 5, 2015, Smyrna Rest Area Conference Room in Smyrna.

Respectively submitted,

Jo Singles

SCPD Administrative Specialist

S:bic/Aug15min

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