REALTIME FILE. 

WVU‑WVU CED Virtual Open House 
February 18, 2021 

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This is being provided in a rough‑draft format.  Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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  [ standing by for start of meeting ]
 
>> All right, thank you, we apologize for the delay in getting started.  And we appreciate your flexibility.  We had some technical issues.  Welcome this snowy, cold morning, we are so glad you are with us today.  This is our first, hopefully, of many, CED open houses.  With the virtual opportunity, we have people visiting from all over the state and perhaps even from out of state that have decided to join us.  We are glad that you're here.  Just a couple of house keeping things, I am your host, I'll be behind the scenes for most of the presentation today.  If you would please turn off your video and mute your mic, that will allow us to more seamlessly provide you with our open house presentation. 
When we do go into breakout rooms later, you may at that time open your video to join in conversations.
The open house is being presented to you in three different phases.  We are here in the main room, we are going to introduce here in a moment our Center for Excellence in Disabilities director.  Dr. Lesley Cottrell and she will lead us through some speed ‑‑ speed rounds of some scenarios of services that we could provide. 
Then we are going to go into breakout rooms where we'll be in smaller groups.  The play out rooms will be 15 minutes long, and they'll be presented in three different times.  So you'll have a 15‑minute Brock where you'll get to meet ‑‑ block where you'll get to meet the clinics and a 15‑minute block where you'll get to meet another one of our programs and then another 15‑minute block to meet the rest of our programs, please stay for all of the sa‑minute segments.  At the end we'll call everybody back to the main room where we'll give our final words.  We have a drawing.  So please stay on for that final room.  We have door prizes to give out, and we'll do those live right while you're still in the room with us.  And then at the very end, we will provide you with survey link.  We ask you to take time to complete, it does help us improve and hopefully provide open house experiences in the future.  So at this time, I'd like to introduce to you our CED director, Dr. Leslie Cottrell, she has been the director of our center since 2015.  She has a doctor agree in developmental psychology and currently also is an acting Professor at the Department of Pediatrics here at West Virginia University school of medicine.  Welcome, and the floor is yours. 
>> Thank you, I appreciate it.  I do want to thank Lori and several others on this call for organizing this open house.  This is the first we have ever had, and we are 40 years old as a center.  I think even though COVID made it virtual for us, it's a nice way to touch base with one another develop this time.  Thanks, Lori and everyone.
So the ‑‑ as Lori mentioned, just to get us started, I'm not going to tell you too much about the center other than some essentials that might give you an idea of who we are.  So we are one center, one center of a 62 national network.  Every state in the United States has at least one.  Sometimes states have three or more, depending on the size of the state.  West Virginia has one, and we serve the whole state in many different ways.  We have four types or areas of service.  It's direct service, of course, that includes technical assistance, information or referral, but we also have training, research and then information dissemination.  That national network comes in handy because, as we learn more about a variety of disabilities and service utilizations we share that with everyone in the state.  Definitely our affiliates and whoever we can find to share it with.  So in West Virginia, like I said, we are 40 years old, we take a life span approach.  Some centers in other states are pediatric focused, some are geriatric, we have all able groups, and in terms of the types of disabilities, we are broad in that area as well.  We have acute and chronic services.  You'll see, hopefully, some of that breadth in open house today.  Our areas of emphasis change, we have five‑year of our areas of emphasis are action to health care, health and wellness, then we have transitions of a wide variety, and I'm blanking on the other one, I'll mention that in the
>> Employment.
>> Of course employment.  We'll talk some of our scenarios focus on one of those scenarios and bring that out a little bit.  Most importantly, you see our am practicing and initiatives, that includes more than eight programs that are here with you today, more than four clinics, and several initiatives that are either grant funded and focused on a particular topic, or have a different focus that's not as yet a program at the center.  Everyone who has joined us today, again the scenarios were built by the team to bring out some of the strengths and how you might ‑‑ when you might think of certain programs for a particular scenario.  So with that, you want me to go straight into the scenarios?
>> Yes, it's all yours, I put them in the chat for you so you have them easily the accessible.
>> Thank you very much.  Our first scenario, it's going to be a speed round, we'll go from program to program and they'll give us an idea of how they ‑‑ what they would do in this scenario, feel free to ask ‑‑ we'll have questions and answers, ability for you to interact in the breakouts.  The first one we'll touch on includes an 18‑year‑old single mom of a 3‑year‑old.  The mother's aging out of foster care, and she ‑‑ who had substance abuse issues and a history of domestic violence.  The 9‑year‑old developing developmental delays including speech.  So we have several programs that would actually provide services for this scenario, we'll start with the impact program. 
>> Thanks, lesley.  I'm soup Sue Workman, I'm the Program Manager, she is the education and employment specialist.  We are the integrate models for parents and children to thrive.  And our program uses a two generational approach to help reduce disparities.
>> Sorry.
>> The care givers and babies with NAS or substance exposure in utero may have.  Our services could offer on a website with an online learning portal, three demonstrations sites across nine West Virginia counties with patient navigation of social services and these social services include transportation, housing, utilities, food insecurity, interpersonal violence, treatment, home visits and education and employment connections, and also coordination for followups pertaining to child development.  Thank you. 
>> Thank you.  I appreciate that.  Next we'll go to traumatic brain injury program.
>> Hi, everyone.  I'm Miranda and I'm the Program Manager with the program.  We also have our outreach coordinator, April, and I think I saw one of our social workers on here.  And so the program provides resource facilitation to individuals that meet two criteria, you're a citizen of West Virginia and have a medical diagnosis of TBI.  We know in cases of domestic violence that medical diagnosis might not always be there, we do have screenings and assistance to help you achieve and get that medical diagnosis.  But what our resource facilitation would provide would be having that individual work with the social worker to get connected to community supports and services, will also pay for neuropsychological evaluations.  We have a program called funds for you, which is a payer of last resort that connects individuals with TBI and spinal cord injuries to quality of life enhancing items, we pay for prescriptions, pay for tires, and so our social work would help you get connected to those funds through that right systematic approach.  Then we have support groups offer training and technical assistance. 
>> Thank you.  That's wonderful, appreciate it, Miranda.  Next we want to emphasize modify program.  Debbie, I'll turn it over to you.
>> Hello over, I'm Debbie Huff, I'm the modify Program Manager, it stand for mentoring and oversight for youth developing independence with foster youth.  While we do this particular young lady could be referred to our program and since she aged out, a foster care, we would do ‑‑ we would meet with her, do an intake, determine if she would be interested in enrolling in a type of post‑secondary education, that's the formal word we have to use which means some type of college or trade school.  We would work with her to determine if she did want to go to school, she would be eligible for two different types of programming through modify, one would be the educational training voucher, the second would be an independent living subsidy, our goal is to enable youth to sort of help plan for their future, their education, and try to be supportive and encouraging them as they are transitioning from the foster care system into independent living. 
>> Thank you, Debbie.  Next let's go to wipa.
>> I'm the Program Manager for the work incentives planning assistance project.  With this young lady, we would help her if she was receiving Social Security benefits, understanding how those will be affected if she chooses to go to work or go into an education program.  We also help with transitions at age 18 from the childhood disability system to the adult disability system in the Social Security world.  So we are all about Social Security benefits and assisting with helping people understand how cash and federal medical benefits are affected when people go to work. 
>> Thank you, Jennifer.  Positive behavior support, PBS. 
>> Hi, I'm Anastasia Riley, the Program Manager for the positive behavior support program.  We have several of the behavior specialists also on the open house.  So we can offer a few different services for this young mother and her child.  We can offer PBS brainstorming, a one hour telehealth session with several behavior specialists just to come up with PBS‑type strategies for her parenting.  We can offer person‑centered planning for the mother or as a family unit, and those are fun interactive process that ‑‑ what a person's dreams are and how to create a plan of action to get there.  She is at risk of out of home placement, since she is under 21 years old, if she is at risk, we can offer functional behavior assessment and positive behavior support program under the PBS support service.  We can offer a wide variety of trainings.  There is an online any time training for parents available.  And we periodically offer other live trainings as deescalation for first responders, making action plans, trauma informed positive behavior support and trauma 101.  Yeah, we can offer a wide variety of resources too. 
>> Excellent, thanks, Anastasia.  Then last but not least in terms of programs, I'm going to turn it over for pads for parents to Sherry.  I believe. 
>> Hi, everyone, thanks for coming.  I'm Sherry, I am a parent network specialist for the pads for parents and the sandwich family programs.  For this young lady, what we can offer is to recommend her going to local or regional substance abuse programs or groups, direct to therapy for domestic violence survival and guide the mom into learning how to advocate for herself and her child.  For the child, we would ask her if the child is in a head start or early learning program or special needs pre‑K.  Recommend to the mom, contact the local school district for an evaluation for special education services, get the child an IEP if they qualify and possible therapy services from the school.  Guide the mom through special education process to get the child services that are needed and work with her to connect with the appropriate CED services and local community resources. 
>> Thank you, Sherry.  I do want to highlight something because many of the services that you're hearing for this particular scenario are just like the center, the only program for the state.  I want to highlight the family to family, which works closely with pads for parents and with that I'll turn it over to Jennifer, is assistive technology.  This is the assistive technology support Center for West Virginia.  Jennifer?
>> Hi, my name is Jennifer, I one of the specialists, Doug is one of the other AT specialists.  He is participating in the open house today.  We provide AT awareness and resources throughout the state, and we are free and available to all ages and abilities.  In this situation, I would discuss with the mom what delays there are and how assistive technology might be helpful in providing some supports that will be needed to help bridge the gaps they are experiencing with the child.  We have a wide variety of tools available in our loan library that can be borrowed.  For example, we may want to look at some of the communication devices and supports available to see if that could assist the child if they have a limited vocabulary or nonverbal and unable to express their needs with that delay area, especially if they're having some meltdowns from a known reason, it could be they are not able to communicate.  That might be an area we can focus on, as well as other areas with delays. 
>> Thank you, Jennifer.  With that, let's switch gears one more time and really now get the perspective from our clinic.  First clinic feeding and swallowing, Cassie, I'll turn it to you.
>> Thank you, Leslie.  I'm Cassie Miller, I am the coordinator for feeding clinic here at the CED.  We also have lots of services to offer to this family.  So we have an interdisciplinary clinic that looks at feeding and swallowing skills and we assess behavior, we have developmental psychology, we look at nutrition from a dietician, motor skills from occupational therapy and then social support as well from social work.  So we all come together and we do direct service assessment for this kiddo, and it can be in person, telehealth, whatever meets their needs and provide followups for that family.  So depending on what the needs for that child are, we can recommend for outside services, we can hook them up to different programs within the center or just really do true clinical intervention to help advance his feeding and swallowing skills, nutrition, behavior surrounding mealtimes.
>> Excellent, thank you.  Grace, I'll turn it over to you for music therapy.
>> Hi, everyone.  I'm grace, I'm a board certified music therapist and operate the music therapy clinic at the CED.  I would say, first and foremost, for anyone hoping to receive music therapy services, we do have a referral and assessment system in order to determine if music therapy intervention would be appropriate for someone.  I will say that for music therapy, it can be effective for anyone at any age.  So it could potentially be beneficial for the mom, if she does have any kind of traumatic brain injury that could exacerbate some of her substance abuse issues and maybe her social and emotional needs.  It could also be potentially beneficial for her child, who's experiencing those delays in speech.  Depending on who would be interested in music therapy, I would do a referral and assessment.  So all of the needs that music therapy can meet could be potentially physical, speech and communication, cognition, social, behavioral, even spiritual.  So those are some of the things that music therapy clinic could provide for either of these two individuals.  In working with other programs, as well, I love collaborating with other therapists and meeting sure the treatment is consistent with what they need.
>> That's wonderful, I appreciate that.  And then last one for this scenario, the next steps clinic.  Diane?
>> Hi, I'm Diane Williams, I'm the training coordinator for next steps clinic.  It's part of our lend grant, which is leadership education in neuro, developmental and related disabilities.  The main purpose of this interdisciplinary clinic is to help our clients who are having trouble with a transition.  And this is for children birth to age 18.  Why maybe it's somebody who is having trouble transitioning out of birth to 3, into the school system, but by and large, the biggest group we see are students who are transitioning out of high school into the adult service world.  So we have a team of interdisciplinary providers, and along with our graduate students, we come up with a life plan, report for the family that they can carry forth in their home community. 
>> Thank you, Diane.  So that wraps up for our first scenario.  Just take‑home points.  I'm really proud of this group, I'm biased, what you heard are clinical and community services that are available to this family.  Services that are available for baby, mom and even family were described.  And then the approaches were a wide variety.  So increase access to care, a variety and education and employment for mom, increased health opportunities.  With substance abuse support, if needed, variety of that.  Parental support, care, also goes into that.  Increased employment, again, looking toward the future, helping to smooth that transition in multiple ways.  And then some daily living assistance, and now ‑‑ we hear about transportation, utilities, food insecurity, those things pop up and all of these other things might go to the wayside.  Our teams also include that, and are often working with clients and families on those issues as well.  So just wanted to highlight.  Thank you all for offering more information.  Let's go to scenario 2, which changes things up a little bit.  So let's say we hear a report, my child has autism, challenging behaviors and sensory concerns and is on a wait list for the neurodevelopment center, one of the centers here through WVU.  I have IDD waiver and having difficulty finding respite care.  We receive that report, let's talk about how we would approach this, start with Jennifer from assistive technology. 
>> In this case, we would want to talk to the family, learn more about the situation, what issues they are experiencing.  Based on that, we could probably provide them with some suggestions of some tools that might be beneficial in helping them possibly reduce some of the behaviors and sensory concerns while they're waiting for the other services to kick in.  Again, many of the tools could be available for them to try from the loan library, just to see if it would help and work, if it didn't help, they could come back to us and say what next type options, for example, we have an assortment of tools that can aid with sensory regulations, such as lap pads with weights, compression vests, tools that can provide vibration if that's something that can be sought out by the child.  Fidget beads that can help them sit and focus if they want to be constantly moving around.
>> Thank you, Jennifer.  PBS.  What would you do.
>> Sure, we could offer a few different client services.  We can do the PBS brainstorming or person centered plan.  We can assist in doing technical assistance call and mentoring them to help build their skills with this individual.  Not only with this individual, but the other people that they serve, such of a one on one training.  And so that, in addition to those PBS brainstorming, person centered planning individual services. 
>> Great, thank you.  Michelle, I'll go to you for specialized family care, care to tell us a little bit more?
>> Sure.  I'm the Program Manager with specialized family care, we actually operate a foster care program for individuals with developmental and intellectual disabilities and serve both children and adults.  Most of our individuals are through IDE waiver or personal care.  The fact that this child has IDD waiver already, we could work with the family already on assessing whether or not we have an existing respite provider in their area, if not, we would work with them with trying to locate a respite provider for them.  Maybe they could have a weekend to have some time away from all the concerns that are involved in raising their child. 
>> Thank you, Michelle.  Go back to Sherry with pads for parents. 
>> Thank you.  What we can offer for this parent is triple p positive parenting classes to address a challenging behaviors and if those behaviors or interventions would be needed, we would refer to additional CED services, provide guidance to advocate with IDE waiver to get listing, respite providers in our area, sore see if that he can work with a family member to provide respite.  Encourage the parent to reach out to local resources for possible camps and other services, talk to the parent about the sensory issues and home interventions that may be available to help with those sensory issues and then recommend review of available resources in the disability resource library and encourage attendance to our circle of family support groups. 
>> Thank you, Sherry.  Let's go to clinics now with music.  Grace?
>> Hello again.  So I would say because music therapy interventions and musical activities can be multi sensory, there would be a few things to consider within the interventions that we use, does the child like to move to music, do they like more receptive experiences, do they have any auditory sensitivity.  So these are all things that I would consider, or whether it's playing instruments or involving kinesthetic types of things.  The other thing that we could work to involve is assistive technology in sessions, to maybe shape behavior for a inquiring new skill.  And also ‑‑ acquiring a new skill.  So client preferred music.  That would be the most motivating to help them acquire different behavior‑type skills.  And, again, I would be working closely with other therapists and with the family to make sure everything is consistent, based on the goals for this child.  Because everybody's goals are different.  And everybody's relationship with music is different.  So I think we could offer a very personalized experience for this child, based on age and based on the needs and their abilities too. 
>> Thank you, Grace.  Then Stephanie from bliss, we haven't heard from Bliss, tell us about that.
>> I'm Stephanie Jones, the program coordinator for behavior and learning intervention services, I provide training and direct services based on the science and behavior analysis.  I work directly with families to try to increase adaptive skills for kiddos, such as communication and decrease challenging behavior, which is any specialty area.  For this team, depending on the level of feed, the parents could attend my group training sessions, or receive individual telehealth consultation in which I problem solve with the families, try to conduct for functional behavior assessments and implement behavior intervention plans based on the family's needs.
>> Thank you, Stephanie.  So that's ‑‑ finishes for scenario 2 and a couple of take‑home messages, wait list does not equal lack of services.  In many cases, particularly for these families, that message might either be perceived or be thought to be true that you're on the wait list and in the meantime, there's nothing available for you.  You just heard some options that definitely are available to the families, even though they might be on wait list elsewhere.  Respite, I see Steve Weissman