Laurie Glader, MDEmily Davidson, MD, MPH

Opening Doors for Children with Disabilities and Special Health Care Needs

Project Adventure: Lessons Learned

Overview

Introduction to Opening Doors Project Adventure

Results to date

Lessons Learned

Opening Doors Project Adventure

Goal: To improve health and well-being through inclusive community-based recreation.Health

InclusionCommunity

Project Adventure: ConceptRandomized controlled trial120 school-age children with special health care needs and disabilityInclusive recreation with mentored support6 months recreation (9 months enrollment)Assess outcomes: fitness and QOLWork towards sustainability and implementation

Project Adventure Kids

Ages 6-15Have special health care need & disabilityTargeted recruitment through CBOs and CHBCleared by primary physician to participate

Project Adventure CoachesCommunity membersCollege and graduate students Mentors are:

screened In collaboration with

trained Partners for Youthwith Disabilities

supervised

MatchingMatches are based on:

Personalities/fit of child, coach, and familyPreferences indicated by both mentors and children/familiesSchedule (site/family/coach)LanguagePhysical requirements

Inclusive RecreationChildren meet mentors (“coaches”) for recreational and fitness opportunities weekly for 6 months at the YMCAActivities based on child interestReview by physical therapist

Project Adventure  Randomized Controlled Trial

Group 3 mo 3 mo 3 mo

1

2

Weekly recreation =

Observation period =

OutcomesSatisfaction of children and familiesActivity Impact on staff and mentors

FitnessQuality of life

Project Adventure: reality

Quick?

Easy?

Possible?

A learning experience. . .

Where we are nowPilot of procedure

4 mentors1 child/mentor pair

Currently enrolled9 child/mentor pairs

Pending matching16 children26 mentors (9 trained; 17 to be trained)

Lessons LearnedIssues specific to recreation and children with special healthcare needs and disabilities

RecreationResearch methodology

Issues relevant to community-based research in general

CollaborationCultural considerations

Child safetyCleared by primary physician to participateContact with school or therapistPT involved in goal-setting, training mentorMentor screening and trainingYMCA training Family member presence

Coach/Staff safety

Training mentorsVineland maladaptive behavior screen for children who may exhibit behavioral challenges Psychology consultation as neededRecognizing safety limits for inclusionLiability

Training mentorsGroup training

Panel discussion, disability awareness Becoming a mentorBehavioral management

Online trainingRequired: adaptive recreationOptional: specific disability education

1:1 teaching for specific child concernsAdult and Child First Aid/CPR

Measurement challenges: fitnessChallenge: how to measure fitness improvement?

Medical and developmental diversity Lack of standardized tools

ResolutionAchievement of set goals

Measurement challenges: QOLQuality of life measure challenges:

Some items not likely to changeOther tools were disability specific

Resolution: Measure self-efficacy

Timeline

Challenges:Outcome measures in diverse populationSafety for children with more significant motor disabilitiesMentor attrition

Lessons Learned: community based research

Collaboration with community organizationsRecruitment from traditionally underserved groups

Collaboration•Collaboration takes time•Importance of sustained and repeated contact•Need for champions

Recruitment from underserved groups

Cultural factorsConcept of disabilityRelationships with healthcare providers and public agenciesLanguage

Creating trust

Conclusion and next stepsAssessment of measures of fitness andStreamlining staffing/trainingSustainability

Community based inclusive recreation can be achieved!

ThanksNIDRR Judy Palfrey, MD & Susan Foley, PhD Noelle Huntington, PhD Opening Doors Research DirectorKelly Horan, MPH Project ManagerJenna Curry, BA Mentor Match SpecialistAmy Yang, BA Research Data CoordinatorPartners for Youth with DisabilitiesGreater Boston YMCAMassachusetts Consortium for CSHCN/ New England SERVEParent Advocacy Coalition for Educational Rights (PACER)

Opening Doors Community PartnersBoston Chinatown Neighborhood CenterEritrean Community CenterEthiopian Community Mutual Assistance AssociationHaitian American Public Health Initiatives, Inc.Massachusetts Alliance of Portuguese SpeakersMassachusetts Asian & Pacific Islanders for HealthSomali Development CenterSoul Touchin’ ExperienceSudanese-American Integration and Development Center

Opening Doors Research and Rehabilitation Training Center

Goal: To reduce barriers and improve services and outcomes for children and youth with special health care needs and disabilities, including children and youth from traditionally underserved communities.