Rose F. Kennedy University Center For Excellence in Developmental Disabilities

(RFK UCEDD)

Children’s Evaluation & Rehabilitation Center (CERC)

Intellectual & Developmental Disabilities Research Center (IDDRC)

RFK CERC

Leaders in Clinical Practice, Training,

Research and Advocacy (LEND)

“Tapping the Advocacy Potential Within a Clinical Setting Through a Variety of

Community Partnerships”

Joanne F Siegel, ACSW, LCSW - Moderator Diana Rodriguez, LMSW & Veronica Arias, Parent Advocate

Danielle Lanzetta, Self-Advocate Mana Mann, MD., former LEND Trainee

Carol Terilli, PT, DPT Einstein Buddies Faculty Mentor & Alex Wolf, MS2 & Allison Grant MS2

Elizabeth Ridgway, OTD, OTR

There are no disclosures to be made by any presenter.

RFK CERC Children’s Evaluation and Evaluation Center

•  Clinical Arm of the RFK UCEDD •  Located in the Bronx •  Interdisciplinary Diagnostic and Treatment

Teams that Serve Children and Adults with Developmental Disabilities

•  Serve 6000 individuals per year through 45,000 visits

PRESENTATION GOALS

1.  Highlight various advocacy and collaboration efforts of the RFK UCEDD within its clinical setting between its community and network partners.

A. Cultural Diversity – Needs of Hispanic families, poverty, immigration and barriers to care

B. Self-Advocacy and Collaboration with Coalitions to improve services and the importance of self-advocacy in the lives of people with Developmental Disabilities

C. Einstein Buddies – Medical students join RFK CERC programs to engage with individuals with DD in partnership learning about each others unique abilities.

C. Use of a CATCH Grant from the American Academy of Pediatrics to develop partnerships between clinicians, families and a community based neighborhood center to identify and address barriers to promoting physical health.

D. In this NIH research funded project in which parents, children with ASD, clinicians and researchers partner together to empower parents with treatment techniques that they can carry over and be used in the home.

Hear Our Voices: A Hispanic Parent’s Perspective

Diana Rodriguez, LMSW Cultural Diversity Coordinator, RFK

UCEDD Veronica Arias, Parent

Bronx Statistics

•  The Bronx is one of the poorest urban counties in the United States and the city's poorest borough.

•  Historically, Hispanics in the USA have less access to services.

Bronx

Hispanic Parent Group

•  The importance of a parent support group – Empowerment – Advocacy – Share resources – Share experiences – Provide emotional support for one another – Offer practical advice to help with a situation – Benefits of a group include feeling less lonely

and less isolated

Parent Perspectives

•  Experiences of a Hispanic Parent with two Disabled Children

•  Language Barriers

•  Stereotypes: Myths and Misconceptions

HEAR OUR VOICES: SELF-ADVOCACY

Danielle Lanzetta, Self-Advocate

Joanne F. Siegel, ACSW, LCSW Associate Director, RFK UCEDD

Activities •  Bronx Community Self-Advocacy Group •  RFK UCEDD CAC Member •  Publicly testimony to the importance of

clinical services, durable medical equipment

•  Meetings with legislators - service needs for people with developmental disabilities

•  Video “HEAR OUR VOICES”

HEAR OUR VOICES •  Participates in VIDEO – 2016 for legislators •  Illustrates12 years of slow reductions in clinical

services •  Shows the need for services in the home •  Chronicles current Early Intervention Services –

staff deficiencies •  Adult living at home with complex chronic clinical

health care needs

http://einstein.yu.edu/centers/childrens-evaluation-rehabilitation/rose-f-kennedy-ucedd/

Einstein Buddies: Community Based Service Learning (CBSL) partnership with RFK CERC OT/

PT Elizabeth Ridgway, OTD, OTR, C/NDT

(Faculty Mentor) Carol Terilli, PT, DPT (Faculty Mentor)

Allison Grant, MSII Alexander Wolf, MSII

Elizabeth.ridgway@einstein.yu.edu Carol.terilli@einstein.yu.edu

Einstein Buddies Innovative experiential learning program created to join together:

– Medical students at Albert Einstein College of Medicine

– Pediatric occupational and physical therapists at Rose F. Kennedy Children’s Evaluation and Rehabilitation Center’s (CERC)

–  Individuals with developmental disabilities and their families including self-advocates

To build collaborative relationships while engaged in shared learning experiences

All About Buddies Intro Night: Slide show emphasizing the fun factor Tour: Orientation to the space and program in context Sessions: All Buddies are asked to commit 2 hours per month Case Presentations: Two to three diagnoses are presented Special Event: Activities planned for Halloween or Earth Day as an example Passing the torch: Leadership is shifted to new Board

Einstein Buddies 2017 Community Based Service Learning (CBSL) student group that pairs with RFK CERC OT/PT therapists, patients and families to develop multifaceted learning relationships

Orientation at

Presents at

Sessions and Special Events

Self advocates as teachers and future Doctors as play partners

Bi-directionally bending the perception of

“ABILITY”

Volunteers at

Case Presentations

Medical Student Experience: Not Defining Children by Their

Disorder •  Child first, patient second •  Let kids guide the session •  No “typical” patient, every child as

unique •  Change in attitude towards those with

disabilities

Medical Student Experience: Healthcare as a Multi-disciplinary

Field •  Working as a team •  Patient-centered care •  Step up, step back •  Ask questions

Experiences of other Buddies •  “The buddies program has helped me build a better understanding of

other facets of clinical medicine, namely physical and occupational therapy, and their broad applications to treating patients. The program also consistently reminded me that I applied to medical school because I wanted to spend my life working with patients. A necessary reminder during the first two years of medical school which contain little clinical experience.”- MS2

•  “I really enjoy spending time with Buddies at CERC! In addition to the fulfillment I gain from assisting clients in their therapy, buddies has supplemented my medical education by allowing me to observe physical and occupational therapy techniques that I have not learned about in class (at least up until this point). I have also gained a valuable, deeper understanding of the patient perspective through spending time with Buddies!” -MS2

•  “As an aspiring pediatrician, I joined Buddies not only because of the opportunity to work with kids, but also to learn about the many crucial components of a child's health care outside of a medical office. Upon volunteering, I was blown away by the variety of activities at the facility and how they were specifically tailored to the current patients. Moving forward, I hope to emphasize the importance of each patient's individuality and specific needs in my care for them as a student and beyond.”- MS3

Improving Children with Special Health Care Needs’ Access to Physical Activity and Nutrition

Programming: A Clinic-Community Partnership

Mana Mann, Carol Terilli, Hajnalka Gabris, Keith Ayoob, Ida Barressi and

Tim Conly

Patient

•  8 year old boy with history of a brachial plexus injury and obesity. – Diet/exercise counseled – Patient’s mother reported lack of facilities for

children in her neighborhood in the Bronx.

Background

•  Prevalence of childhood overweight and obesity tripled (Ogden et al 2012)

•  In some low income neighborhoods, prevalence up to 47% (Reznik et al 2008)

•  Children with special health care needs at increased risk of obesity (Singh et al 2009) –  residing in environments prone to obesity – unhealthy food options –  limited access to physical activity resources.

AAP Community Access to Child Health (CATCH) Planning Grant

Project Goals 1.  Build a partnership of community-based organizations, local

schools, pediatricians, nutritionists, and therapists with the intent of creating more physical activity resources for children with special health care needs in the community.

2. Build a physical activity and nutrition component to programs organized by community-based groups to reduce barriers for children to attend.

3.  Conduct focus groups with parents of children with special health care needs to identify barriers and facilitators to physical activity.

4.  Create a community map for children with disabilities that includes recreational programs, playgrounds appropriate for children with special health care needs, and healthy food resources to distribute to children and their families.

Rose F. Kennedy Center

•  Our Team – Pediatrician – Physical Therapist (Carol Terilli) – Nutritionist (Keith Ayoob) – Speech Therapist (Ida Barressi) – Occupational Therapist (Tim Conly)

Kingsbridge Heights Community Center (KHCC)

•  Hajnalka Gabris, Director of Special Needs Program

•  Early Childhood Programs •  Youth Programs •  Adult & Family Programs

KHCC After-school Program

•  Children aged 6-18 years – Majority of participants with Autism,

Intellectual Disability, Down Syndrome

KHCC Calendar MONDAY TUESDAY WEDNESDAY THURSDAY FRIDAY

TEEN GROUP TEEN GROUP TEEN GROUP TEEN GROUP TEEN GROUP Table top Games/Socialization/Art Front Room

Table top Games/Socialization Front Room

Table top Games/Socialization Front Room

Table top Games/Socialization/Art Front Room

Table top Games/Socialization/Art Front Room

Front Room Front Room Front Room Front Room Front Room

Academic Time Computer Room

Academic Time Computer Room

Academic Time Computer Room

Academic Time Computer Room

Cooking Club Front Room

Gym Music Front Room

Gym Gym Dinner Front Room

Tablets Front Room

Tablets Front Room

Tablets Front Room

Tablets Front Room

Computers Computer Room

Dinner Front Room

Dinner Front Room

Dinner Front Room

Dinner Front Room

Pick-up/Drop off Front Room/Van

Pick-up/Drop off Pick-up/Drop off Pick-up/Drop off Pick-up/Drop off

x

2:30 - 4:00

4:00 - 4:15

4:20 - 5:00

5:00 - 5:30

5:30 - 6:00

6:00 - 6:20

6:20 - 7:00

-Gym time

-Music

-Cooking

-Meals/Snacks

-Gardening

-Homework

Collaboration

Rose F. Kennedy

Center/CERC -Clinical (Evals & therapy) -Teaching -Advocacy -Research

Kingsbridge Heights Community Center -Early Childhood Programs -Youth Programs -Adult & Family Programs

Collaborative Process -Identifying needs of after school program -Evaluating program strengths/challenges -Building on current curriculum

Next Steps •  Discussing with teachers and families about

current programming and ways to build a physical activity and nutrition curriculum

•  Developing physical activity curriculum – Provided bounce house for seasonal events

•  Developing nutrition curriculum – Working with gardening instructor to dovetail

curriculum. – Provide books promoting PA, healthy food

choices

References • 1. Ogden CL, Carroll MD, Kit BK, Flegal KM. Prevalence of obesity and trends in body mass index among US children and adolescents, 1999-2010. JAMA. 2012;307(5):483-490. doi: 10.1001/jama.2012.40 [doi]. • 2. Singh GK, Kogan MD, Yu SM. Disparities in obesity and overweight prevalence among US immigrant children and adolescents by generational status. J Community Health. 2009;34(4):271-281. doi: 10.1007/s10900-009-9148-6 [doi]. • 3. Reznik M, Frascella A, Appel D, Ozuah P. Pedometer-determined physical activity levels in inner-city school children. . Arch Dis Child. 2008;93(Supple II). • 4. Singh GK, Yu SM, Siahpush M, Kogan MD. High levels of physical inactivity and sedentary behaviors among US immigrant children and adolescents. Arch Pediatr Adolesc Med. 2008;162(8):756-763. doi: 10.1001/archpedi.162.8.756 [doi]. • 5. Pate RR, Pfeiffer KA, Trost SG, Ziegler P, Dowda M. Physical activity among children attending preschools. Pediatrics. 2004;114(5):1258-1263. doi: 114/5/1258 [pii]. • 6. Fisher A, Reilly JJ, Kelly LA, et al. Fundamental movement skills and habitual physical activity in young children. Med Sci Sports Exerc. 2005;37(4):684-688. doi: 00005768-200504000-00023 [pii]. • 7. Tucker P. The physical activity levels of preschool-aged children: A systematic review. . Early Child Res Q. 2008;23:547-558. • 8. Minihan PM, Must A, Anderson B, Popper B, Dworetzky B. Children with special health care needs: Acknowledging the dilemma of difference in policy responses to obesity. Prev Chronic Dis. 2011;8(5):A95. doi: A95 [pii]. • 9. McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics. 1998;102(1 Pt 1):137-140. • 10. Bloemen MA, Backx FJ, Takken T, et al. Factors associated with physical activity in children and adolescents with a physical disability: A systematic review. Dev Med Child Neurol. 2015;57(2):137-148. doi: 10.1111/dmcn.12624 [doi]. • 11. Carlon SL, Taylor NF, Dodd KJ, Shields N. Differences in habitual physical activity levels of young people with cerebral palsy and their typically developing peers: A systematic review. Disabil Rehabil. 2013;35(8):647-655. doi: 10.3109/09638288.2012.715721 [doi]. • 12. Institute of Medicine (US) Committee on Prevention of Obesity in Children and Youth. . 2005. doi: NBK83825 [bookaccession]. • 13. King G, Law M, King S, Rosenbaum P, Kertoy MK, Young NL. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr. 2003;23(1):63-90. • 14. Murphy NA, Carbone PS, American Academy of Pediatrics Council on Children With Disabilities. Promoting the participation of children with disabilities in sports, recreation, and physical activities. Pediatrics. 2008;121(5):1057-1061. doi: 10.1542/peds.2008-0566 [doi]. • 15. Council on Sports Medicine and Fitness, Council on School Health. Active healthy living: Prevention of childhood obesity through increased physical activity. Pediatrics. 2006;117(5):1834-1842. doi: 117/5/1834 [pii]. • 16. Yazdani S, Yee CT, Chung PJ. Factors predicting physical activity among children with special needs. Prev Chronic Dis. 2013;10:E119. doi: 10.5888/pcd10.120283 [doi]. • 17. Biddle SJ, Gorely T, Stensel DJ. Health-enhancing physical activity and sedentary behaviour in children and adolescents. J Sports Sci. 2004;22(8):679-701. doi: 10.1080/02640410410001712412 [doi]. • 18. Janssen I, Leblanc AG. Systematic review of the health benefits of physical activity and fitness in school-aged children and youth. Int J Behav Nutr Phys Act. 2010;7:40-5868-7-40. doi: 10.1186/1479-5868-7-40 [doi]. • 19. King G, Law M, King S, Rosenbaum P, Kertoy MK, Young NL. A conceptual model of the factors affecting the recreation and leisure participation of children with disabilities. Phys Occup Ther Pediatr. 2003;23(1):63-90. • 20. Wilson PE, Clayton GH. Sports and disability. PM R. 2010;2(3):S46-54; quiz S55-6. doi: 10.1016/j.pmrj.2010.02.002 [doi]. • 21. Community health profiles southeast bronx. http://www.nyc.gov/html/doh/downloads/pdf/data/2003nhp-bronxg.pdf. Updated 2000. Accessed 01/12, 2016.

Sensory Integration Therapy in Autism:

Mechanisms and Effectiveness

Elizabeth Ridgway, OTD, OTR, C/NDT Elizabeth.ridgway@einstein.yu.edu

RFK CERC

Tapping Advocacy Potential Within Clinical Research

•  For families with children on the Autism Spectrum, the difficulty in obtaining appropriate intervention remains a persistent problem.

•  To respond to the advocacy request of families, the RFK's Children’s Evaluation and Rehabilitation Center (CERC)/UCEDD and the RFK IDDRC have made available two of the most requested interventions by families of children with autism: sensory integration therapy (SIT) and applied behavioral analysis (ABA) interventions to families in the Bronx.

•  The interventions are individually tailored to each child with high standards for fidelity to treatment principles.

Sensory Integration Therapy in Autism: Mechanism and

Effectiveness •  6-9.5 year olds with ASD •  3 Arms: Sensory Integration Therapy, ABA, No

Treatment •  Intervention: 30 - 1 hr. sessions •  Extensive Evaluation Process with at 3 points:

Initial, Immediate Post-treatment & 12 week FU •  Assess:

–  Sensory processing, multi-sensory integration, Functional Abilities & parent concerns and priorities

–  Behavioral and Neurophysiologic measures

Empowering Families through Research

•  Family centered goals drive intervention developed and prioritized by parents in collaboration with children, clinicians, and researchers

•  Empowering Caregivers with training imbedded in the intervention for carry over at home and specific parent modules

•  Family Goals are scaled by IE using Goal Attainment Scaling (GAS) and are a primary outcome measure in the study

•  Clinician researchers are increasing evidence, improving practice, and enhancing LEND trainee competency

•  Increasing family access and availability to SIT and ABA interventions in the Bronx

Caregiver in Sensory Integration Intervention

•  SIT focuses on improving sensory motor factors that affect behavior, skill development, learning and participation in activities.

•  6 y/o boy with ASD Somatodyspraxia and visuodyspraxia with problems in Vestibular and Bilateral Integration and is hyperreactive to smells and hyporeactive to pain

•  Goal 3: To increase participation in daily routines, xxx will transition from one activity to another given verbal warning 15 minutes ahead of time and engaging in verbal resistance for no more than 3 minutes, for 75% of transitions throughout the day.

•  Other goals around transitions, expanding his routine, seated for homework, and dressing

Caregiver in Behavioral Intervention

•  Behavioral Intervention is designed to change specific behaviors with consideration of antecedents and consequences that elicit and maintain behavior.

•  7 ½ y/o girl with ASD with Somatodyspraxia and problems in Vestibular Function with hyperreactivity to sound

•  Goal #5: xxx will feed herself independently using utensils during family mealtime with no more than 3 verbal/tactile prompts within 12 weeks.

•  Other goals around transitions, social interaction, seated for homework, and dressing

•  In this video clip she is working to decrease having bottle at bedtime

Enhancing Training and Building Competency

in the Community •  Development of clinician researchers

–  Creating evidence for practice –  Increasing clinicians and families voices in research

•  Building competency in assessment and treatment in Sensory Integration and Behavioral Interventions

–  Practitioner expertise passed on to LEND trainees in OT and PT including mentorship participation

–  On going mentorship for interventionists’ professional development –  Evaluation of sessions for Fidelity to treatment informing supervision and training –  Sponsorship of multiple community trainings for occupational therapists in

assessment and intervention

Research Team •  RFK CERC

–  Elizabeth Ridgway –  Tim Conly

•  RFK IDDRC –  Sophie Molholm (Co-PI) –  John Foxe –  Julianna Bates –  Sophia Zhou –  Danielle DeMaio –  Douwe Horsthuis –  Rachel Hester –  Sydney Jacobs

•  Thomas Jefferson University –  Roseann Schaaf (Co-PI) –  Rachel Dumont –  Zoe Mailloux –  Benjamin Leiby

•  Queens College –  Emily JonesCaraline

Kobel –  Maya Madzharova

•  Independent Evaluators/ Interventionists

–  Joanne Hunt

–  Donna Kelly

–  John Eboli

–  Nadia Rust

–  Anna Keenaghan

–  Sue Seiler

–  Monica Nazario

–  Leon Kirschner

–  Ryan Agate

–  Arthur Kern

–  Sara Schlussel

•  Lindsay Curtis •  Charlene Agnew

•  Julia Iannaccone

•  Kayla Derby

Funding –  NICHD #RO1HD082814

–  American Occupational Therapy Foundation (AOTF)

Thank you to all participants and families

Questions?

Thanks to All of Our RFK CERC Families for Lifting Their Voices

So That All Can Be Hear!