Laurie Glader, MD Emily Davidson, MD, MPH

1. Laurie Glader, MD Emily Davidson, MD, MPH

2. Overview Introduction to Opening Doors Project Adventure Results to date Lessons Learned Briefly, we will first provide an Introduction to Opening Doors Project Adventure Next, we�ll describe our results to date. Finally, we�ll share with you some of the many lessons we�ve learned in the process of developing this project. Briefly, we will first provide an Introduction to Opening Doors Project Adventure Next, we�ll describe our results to date. Finally, we�ll share with you some of the many lessons we�ve learned in the process of developing this project.

3. Opening Doors Project Adventure Goal: To improve health and well-being through inclusive community-based recreation. Health Inclusion Community The goal of Project Adventure is to improve health and well-being through inclusive community-based recreation. Many successful programs have been developed to provide physical activity for specific groups of individuals with disabilities. However, much less work has been done on child-centered inclusive recreation for children with a wide range of disabilities. Analogous to providing education in the least restrictive environment, in Opening Doors Project Adventure we set out to design a program in which a child with special health care needs and disability can choose an activity and participate with support included in the general community. This project also has a central goal of engaging children with disabilities who are members of underrepresented minorities including those who face linguistic, cultural and/or financial barriers to participation. The goal of Project Adventure is to improve health and well-being through inclusive community-based recreation. Many successful programs have been developed to provide physical activity for specific groups of individuals with disabilities. However, much less work has been done on child-centered inclusive recreation for children with a wide range of disabilities. Analogous to providing education in the least restrictive environment, in Opening Doors Project Adventure we set out to design a program in which a child with special health care needs and disability can choose an activity and participate with support included in the general community. This project also has a central goal of engaging children with disabilities who are members of underrepresented minorities including those who face linguistic, cultural and/or financial barriers to participation.

4. Project Adventure: Concept Randomized controlled trial 120 school-age children with special health care needs and disability Inclusive recreation with mentored support 6 months recreation (9 months enrollment) Assess outcomes: fitness and QOL Work towards sustainability and implementation We set out to design a program that would meet these goals. Project Adventure enables school-age children with special health care needs and disabilities to participate in inclusive recreation. For example, if a 15 year old boy with cerebral palsy wants to try out yoga, his coach will help him do that within the context of the yoga classes already available. If a 12 year old girl with Down syndrome wants to learn how to lift weights, she will do that in the weight room with assistance from her coach. We set out to design a program that would meet these goals. Project Adventure enables school-age children with special health care needs and disabilities to participate in inclusive recreation. For example, if a 15 year old boy with cerebral palsy wants to try out yoga, his coach will help him do that within the context of the yoga classes already available. If a 12 year old girl with Down syndrome wants to learn how to lift weights, she will do that in the weight room with assistance from her coach.

5. Project Adventure Kids Ages 6-15 Have special health care need & disability Targeted recruitment through CBOs and CHB Cleared by primary physician to participate The Kids in Project Adventure are ages 6-15 We use the CSHCN screener to determine eligibility. We are targeting recruitment of kids with a wide range of disabilities and special health care needs through the leadership of community based organizations and Children�s Hospital Boston programs. All participants must be cleared by their primary care provider to partcipate. The Kids in Project Adventure are ages 6-15 We use the CSHCN screener to determine eligibility. We are targeting recruitment of kids with a wide range of disabilities and special health care needs through the leadership of community based organizations and Children�s Hospital Boston programs. All participants must be cleared by their primary care provider to partcipate.

6. Project Adventure Coaches Community members College and graduate students Mentors are: screened In collaboration with trained Partners for Youth with Disabilities supervised Coaches include community members who may be recruited through CBO�s or the Y or may be local college and graduate students who are often interested in careers in the health sciences. Each mentor has on-going supervision from a mentor-match specialist through PYD, an organization that focuses on empowering youth with disabilities through mentoring relationships. Coaches include community members who may be recruited through CBO�s or the Y or may be local college and graduate students who are often interested in careers in the health sciences. Each mentor has on-going supervision from a mentor-match specialist through PYD, an organization that focuses on empowering youth with disabilities through mentoring relationships.

7. Matching Matches are based on: Personalities/fit of child, coach, and family Preferences indicated by both mentors and children/families Schedule (site/family/coach) Language Physical requirements Mentor match specialist, Jenna Curry, meets individually with each child as well as each mentor. This allows her to take into account such intangibles as sense of humor and personality style when making the matches. Additional considerations include participant preferences and logistics including schedules, Y location, and a common language. Sometimes there are physical considerations to account for, such as ensuring that a child with limited mobility is paired with a mentor who has the physical capacity to safely perform transfers, etc. In all cases, we attempt to make the safest and most feasible match possible. Mentor match specialist, Jenna Curry, meets individually with each child as well as each mentor. This allows her to take into account such intangibles as sense of humor and personality style when making the matches. Additional considerations include participant preferences and logistics including schedules, Y location, and a common language. Sometimes there are physical considerations to account for, such as ensuring that a child with limited mobility is paired with a mentor who has the physical capacity to safely perform transfers, etc. In all cases, we attempt to make the safest and most feasible match possible.

8. Inclusive Recreation Children meet mentors (�coaches�) for recreational and fitness opportunities weekly for 6 months at the YMCA Activities based on child interest Review by physical therapist Children meet with their mentors � or as the kids prefer to say their �coaches� � for recreational and fitness opportunities weekly for six months at one of 4 YMCAs through the Greater Boston YMCA network. The activities are selected based on the child�s interest after review by physical therapist for safety and developmental appropriateness.Children meet with their mentors � or as the kids prefer to say their �coaches� � for recreational and fitness opportunities weekly for six months at one of 4 YMCAs through the Greater Boston YMCA network. The activities are selected based on the child�s interest after review by physical therapist for safety and developmental appropriateness.

9. Project Adventure Randomized Controlled Trial Project Adventure was designed as a randomized controlled trial with two groups: kids who start immediately and kids who wait a 3 month period before starting. This would allow us to see whether changes in fitness and quality of life in group one were due to participation in Project Adventure. For those randomized to start immediately, a waiting period at the end would allow us to see how the changes were sustained once the program ended. Project Adventure was designed as a randomized controlled trial with two groups: kids who start immediately and kids who wait a 3 month period before starting. This would allow us to see whether changes in fitness and quality of life in group one were due to participation in Project Adventure. For those randomized to start immediately, a waiting period at the end would allow us to see how the changes were sustained once the program ended.

10. Outcomes Satisfaction of children and families Activity Impact on staff and mentors Fitness Quality of life Our planned outcome measures were: Satisfaction of children and families Activity (what the child chooses to do during free time �e.g. watch tv, ride a bike) Impact on staff and mentors Fitness Quality of life We will talk more about these last two Our planned outcome measures were: Satisfaction of children and families Activity (what the child chooses to do during free time �e.g. watch tv, ride a bike) Impact on staff and mentors Fitness Quality of life We will talk more about these last two

11. Project Adventure: reality Quick? Easy? Possible? A learning experience. . . Taking the concept of Project Adventure into reality has required some sweat and stamina. It has not been quick, it has not been easy but our participants are proving it is possible. We believe we have built a robust model based on our early experiences that identified a number of very important issues. Let�s take a look at where we are now, and lessons we�ve learned.Taking the concept of Project Adventure into reality has required some sweat and stamina. It has not been quick, it has not been easy but our participants are proving it is possible. We believe we have built a robust model based on our early experiences that identified a number of very important issues. Let�s take a look at where we are now, and lessons we�ve learned.

12. Where we are now Pilot of procedure 4 mentors 1 child/mentor pair Currently enrolled 9 child/mentor pairs Pending matching 16 children 26 mentors (9 trained; 17 to be trained) Project Adventure is up and running. We piloted mentor recruitment and training with a group of 4 mentors. We were able to pilot procedures for matching, Y membership, scheduling and outcome measures with 1 child/mentor pair. We have subsequently implemented a number of changes and currently have 9 child/mentor pairs meeting regularly. 16 children and 26 mentors have been enrolled and are awaiting completion of training and matching. Project Adventure is up and running. We piloted mentor recruitment and training with a group of 4 mentors. We were able to pilot procedures for matching, Y membership, scheduling and outcome measures with 1 child/mentor pair. We have subsequently implemented a number of changes and currently have 9 child/mentor pairs meeting regularly. 16 children and 26 mentors have been enrolled and are awaiting completion of training and matching.

13. Lessons Learned Issues specific to recreation and children with special healthcare needs and disabilities Recreation Research methodology Issues relevant to community-based research in general Collaboration Cultural considerations So what have we learned? The Lessons we�ve learned can be divided into groups of those issues specific to recreation and CSHCN and disabilities and those issues relevant to community-based research in general. So what have we learned? The Lessons we�ve learned can be divided into groups of those issues specific to recreation and CSHCN and disabilities and those issues relevant to community-based research in general.

14. Child Safety Cleared by primary physician to participate Contact with school or therapist PT involved in goal-setting, training mentor Mentor screening and training YMCA training Family member presence Minimizing risk of injury to children involved in the study is of paramount importance. Some of our procedures to enhance safety were implemented from the outset of the project. Others have been refined based on our experiences with the first pairs of matches. Each child is cleared by their primary care physician through a written clearance form. At times, we have needed further direct conversation with physicians to clarify the project and the child�s ability to participate. We obtain permission to contact educators or therapists in the community who can provide information to the mentor match specialist to further support the child�s safe participation in Project Adventure. This has proven to be invaluable in helping to understand a child�s behavior outside the home and effective strategies for working with them. A physical therapist is involved at the goal-setting session at the onset of participation to ensure the chosen activities are safe and appropriate for the child. And also helps train the mentor about the child�s physical needs. Mentors are screened carefully including criminal record background check (CORI), PPD screen, three references, and interview with the mentor match specialist. Mentor training which we will address next, is also designed to maximize child safety and includes CPR and first aide training. The YMCA staff are trained in CPR and many have attended additional training on inclusive recreation and disability education provided by Project Adventure. We also require that a family member be present at the YMCA � initially in the same room but later family member may exercise elsewhere in Y as long as they are available by cell phone. In certain instance where there may be a greater risk to the child (such as a child with seizures who wants to swim), we ask that the parent remain present throughout. Minimizing risk of injury to children involved in the study is of paramount importance. Some of our procedures to enhance safety were implemented from the outset of the project. Others have been refined based on our experiences with the first pairs of matches. Each child is cleared by their primary care physician through a written clearance form. At times, we have needed further direct conversation with physicians to clarify the project and the child�s ability to participate. We obtain permission to contact educators or therapists in the community who can provide information to the mentor match specialist to further support the child�s safe participation in Project Adventure. This has proven to be invaluable in helping to understand a child�s behavior outside the home and effective strategies for working with them. A physical therapist is involved at the goal-setting session at the onset of participation to ensure the chosen activities are safe and appropriate for the child. And also helps train the mentor about the child�s physical needs. Mentors are screened carefully including criminal record background check (CORI), PPD screen, three references, and interview with the mentor match specialist. Mentor training which we will address next, is also designed to maximize child safety and includes CPR and first aide training. The YMCA staff are trained in CPR and many have attended additional training on inclusive recreation and disability education provided by Project Adventure. We also require that a family member be present at the YMCA � initially in the same room but later family member may exercise elsewhere in Y as long as they are available by cell phone. In certain instance where there may be a greater risk to the child (such as a child with seizures who wants to swim), we ask that the parent remain present throughout.

15. Coach/Staff safety Training mentors Vineland maladaptive behavior screen for children who may exhibit behavioral challenges Psychology consultation as needed Recognizing safety limits for inclusion Liability Another aspect of safety in Project Adventure is minimizing risk for coachs and Ystaff. Training mentors in behavior management strategies helps ensure their safety as well as the safety of the children. For children with more significant behavioral issues, we use the vineland maladaptive behavior screen to help assess severity. Psychology consultation is obtained as needed to help determine whether a child can be safely included in the program. Liability was a concern we needed to be address before first matches could be made. We worked with CHB, the YMCA, and Partners to ensure coverage of all participants.Another aspect of safety in Project Adventure is minimizing risk for coachs and Ystaff. Training mentors in behavior management strategies helps ensure their safety as well as the safety of the children. For children with more significant behavioral issues, we use the vineland maladaptive behavior screen to help assess severity. Psychology consultation is obtained as needed to help determine whether a child can be safely included in the program. Liability was a concern we needed to be address before first matches could be made. We worked with CHB, the YMCA, and Partners to ensure coverage of all participants.

16. Training mentors Group training Panel discussion, disability awareness Becoming a mentor Behavioral management Online training Required: adaptive recreation Optional: specific disability education 1:1 teaching for specific child concerns Adult and Child First Aid/CPR Training mentors has required a balancing of efficiency and comprehensiveness and consists of multiple components. Our group training initially included a panel discussion with parents, disability awareness, and information on becoming a mentor. Early in our recruitment we realized the need for more behavioral training for the mentors and added that to the in-person training. Our initial online training was extensive. Based on feedback from mentors we shortened it to focus on practical scenarios for adapting recreation. The more extensive disability-specific modules are available to all mentors as a reference. We also recognized a need for more individualized teaching for the specific child. All coaches receive certification in adult and child first aid/CPR. ---- First aid/CPR-8 hours Online education � 2-3 hours Live training-Two, 3 hour seminars (6 hours total) Meeting with PT-1-2 hours Training mentors has required a balancing of efficiency and comprehensiveness and consists of multiple components. Our group training initially included a panel discussion with parents, disability awareness, and information on becoming a mentor. Early in our recruitment we realized the need for more behavioral training for the mentors and added that to the in-person training. Our initial online training was extensive. Based on feedback from mentors we shortened it to focus on practical scenarios for adapting recreation. The more extensive disability-specific modules are available to all mentors as a reference. We also recognized a need for more individualized teaching for the specific child. All coaches receive certification in adult and child first aid/CPR. ---- First aid/CPR-8 hours Online education � 2-3 hours Live training-Two, 3 hour seminars (6 hours total) Meeting with PT-1-2 hours

17. Measurement challenges: fitness Challenge: how to measure fitness improvement? Medical and developmental diversity Lack of standardized tools Resolution Achievement of set goals One of the earliest and persistent challenges for this project has been trying to identify a measure of fitness in a group of children with a range of developmental, intellectual, and physical challenges. We have been working with the 6 minute walk test or children who are ambulatory. So far, only 2 of the 10 children have been able to complete the full 6 minutes of walking (due to compliance or to fatigue). For every child, we use walk test to gather qualitative information on the child�s ability to follow directions, and participate in recreational activities. We are collecting data at the 2 minute point in the walk and hope that we may be able to validate the 2 minute walk test for use in this population. We have been unable to identify an adequate measure of fitness in non-ambulatory children. Even obtaining growth parameters can be challenging, we are currently collecting weight and height to calculate BMI but recognized that other measures such as waist circumference or tricep skin-thickness folds would not be accepted by many of the children in the study. Given the challenges of measuring fitness, achievement of a personal set of goals has emerged as a more meaningful measure of the impact of the program. One of the earliest and persistent challenges for this project has been trying to identify a measure of fitness in a group of children with a range of developmental, intellectual, and physical challenges. We have been working with the 6 minute walk test or children who are ambulatory. So far, only 2 of the 10 children have been able to complete the full 6 minutes of walking (due to compliance or to fatigue). For every child, we use walk test to gather qualitative information on the child�s ability to follow directions, and participate in recreational activities. We are collecting data at the 2 minute point in the walk and hope that we may be able to validate the 2 minute walk test for use in this population. We have been unable to identify an adequate measure of fitness in non-ambulatory children. Even obtaining growth parameters can be challenging, we are currently collecting weight and height to calculate BMI but recognized that other measures such as waist circumference or tricep skin-thickness folds would not be accepted by many of the children in the study. Given the challenges of measuring fitness, achievement of a personal set of goals has emerged as a more meaningful measure of the impact of the program.

18. Measurement challenges: QOL Quality of life measure challenges: Some items not likely to change Other tools were disability specific Resolution: Measure self-efficacy We sought but did not find an adequate measure to capture the effect of Project Adventure on Quality of Life. Many of the available measures included many items that were either not relevant or unlikely to change as a result of participation in Project Adventure. Other tools were disability specific or not appropriate for children with intellectual disabilities. Measures of self-efficacy (i.e. how the child feels about his capacity to participate) seems more relevant to the goal of Project Adventure. That said, we had to modify the standardized measures as there were many items that were not relevant to our population and we are limited in our ability to get this information from children with more significant intellectual or communication disabilities. Physical, social, emotional, role functioning (go to school, do homework)We sought but did not find an adequate measure to capture the effect of Project Adventure on Quality of Life. Many of the available measures included many items that were either not relevant or unlikely to change as a result of participation in Project Adventure. Other tools were disability specific or not appropriate for children with intellectual disabilities. Measures of self-efficacy (i.e. how the child feels about his capacity to participate) seems more relevant to the goal of Project Adventure. That said, we had to modify the standardized measures as there were many items that were not relevant to our population and we are limited in our ability to get this information from children with more significant intellectual or communication disabilities. Physical, social, emotional, role functioning (go to school, do homework)

19. Timeline Challenges: Outcome measures in diverse population Safety for children with more significant motor disabilities Mentor attrition We initially anticipated being able to launch our randomized controlled trial at this juncture. However, in reality, this is an extremely complex study which has highlighted the difficulties in measuring outcomes in a physically and developmentally diverse population. Because we set out to be inclusive of children with ALL types of disabilities both physical and intellectual, ensuring safety for all participants requires a repertoire of individualized screening, training, and management strategies. We are currently enrolling our first participants with more significant physical disabilities which we anticipate will require further refinement of our procedures. We have learned that mentors volunteer when they are ready to participate and must be matched quickly to avoid attrition. We need to address these challenges as we move toward our randomized controlled trial. We initially anticipated being able to launch our randomized controlled trial at this juncture. However, in reality, this is an extremely complex study which has highlighted the difficulties in measuring outcomes in a physically and developmentally diverse population. Because we set out to be inclusive of children with ALL types of disabilities both physical and intellectual, ensuring safety for all participants requires a repertoire of individualized screening, training, and management strategies. We are currently enrolling our first participants with more significant physical disabilities which we anticipate will require further refinement of our procedures. We have learned that mentors volunteer when they are ready to participate and must be matched quickly to avoid attrition. We need to address these challenges as we move toward our randomized controlled trial.

20. Lessons Learned: community based research Collaboration with community organizations Recruitment from traditionally underserved groups More general considerations for community-based research have also surfaced. We will just touch on collaboration and recruitment from traditionally underserved groups as these themes will be discussed in more detail in other sessions.More general considerations for community-based research have also surfaced. We will just touch on collaboration and recruitment from traditionally underserved groups as these themes will be discussed in more detail in other sessions.

21. Collaboration Collaboration takes time Importance of sustained and repeated contact Need for champions As you can see, Project Adventure like all of the Opening Doors program is a very collaborative effort. We have learned that collaboration takes time and working with community agencies is most likely to succeed with sustained and repeated contact. The need for champions is also critical. At the YMCA, we were fortunate to identify champions both at the highest administrative level and in Y staff who have daily member contact.As you can see, Project Adventure like all of the Opening Doors program is a very collaborative effort. We have learned that collaboration takes time and working with community agencies is most likely to succeed with sustained and repeated contact. The need for champions is also critical. At the YMCA, we were fortunate to identify champions both at the highest administrative level and in Y staff who have daily member contact.

22. Recruitment from underserved groups Cultural factors Concept of disability Relationships with healthcare providers and public agencies Language Creating trust There are cultural factors that influence participation including the families concept of disability, relationships with healthcare providers and public agencies and language barriers. Recognizing these issues and creating trust through repeated contact and champions within community based organizations is allowing us to enroll children and learn from their experiences. Families from all backgrounds may benefit from education about what inclusive recreation means � even for families who have already chosen to join Project Adventure, families sometimes cannot imagine how their child might be included.There are cultural factors that influence participation including the families concept of disability, relationships with healthcare providers and public agencies and language barriers. Recognizing these issues and creating trust through repeated contact and champions within community based organizations is allowing us to enroll children and learn from their experiences. Families from all backgrounds may benefit from education about what inclusive recreation means � even for families who have already chosen to join Project Adventure, families sometimes cannot imagine how their child might be included.

23. Conclusion and next steps Assessment of measures of fitness and Streamlining staffing/training Sustainability Community based inclusive recreation can be achieved! We have learned a tremendous amount from our experiences to date with Project Adventure. It is a real thrill to see our first pairs actively engaged in activities at the Y. We are pleased to have so many children and mentors getting ready to begin participation. Our top priorities for the coming months include assessment of the value and effectiveness of our current outcome measures; continuing to improve our recruitment, screening, and training procedures to maximize participation of children and mentors and safety, and looking towards increased integration of Project Adventure into the culture of the YMCAs with a view toward sustainability and replication. Finally, We are excited by our initial findings that community based inclusive recreation for children with special health care needs and disabilities can be achieved! We have learned a tremendous amount from our experiences to date with Project Adventure. It is a real thrill to see our first pairs actively engaged in activities at the Y. We are pleased to have so many children and mentors getting ready to begin participation. Our top priorities for the coming months include assessment of the value and effectiveness of our current outcome measures; continuing to improve our recruitment, screening, and training procedures to maximize participation of children and mentors and safety, and looking towards increased integration of Project Adventure into the culture of the YMCAs with a view toward sustainability and replication. Finally, We are excited by our initial findings that community based inclusive recreation for children with special health care needs and disabilities can be achieved!

24. Thanks NIDRR Judy Palfrey, MD & Susan Foley, PhD Noelle Huntington, PhD Opening Doors Research Director Kelly Horan, MPH Project Manager Jenna Curry, BA Mentor Match Specialist Amy Yang, BA Research Data Coordinator Partners for Youth with Disabilities Greater Boston YMCA Massachusetts Consortium for CSHCN/ New England SERVE Parent Advocacy Coalition for Educational Rights (PACER) Opening Doors Community Partners Boston Chinatown Neighborhood Center Eritrean Community Center Ethiopian Community Mutual Assistance Association Haitian American Public Health Initiatives, Inc. Massachusetts Alliance of Portuguese Speakers Massachusetts Asian & Pacific Islanders for Health Somali Development Center Soul Touchin� Experience Sudanese-American Integration and Development Center Why did I think there were 10 CBO�s? Why did I think there were 10 CBO�s?

25. Opening DoorsResearch 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. We and our colleagues at Children�s Hospital and the Institute for Community Inclusion were fortunate to have received a grant from the National Institute on Disability and Rehabilitation Research (also known as NIDRR) to create a center to address the following over-arching goal: �To reduce barriers and improve services and outcomes for children and youth with disabilities and special health care needs.� The grant especially targets �children and youth from traditionally underserved communities who have disabilities and special health care needs.� These include families who face linguistic, cultural and/or financial barriers to participation. As you have heard earlier in the day, the grant includes projects addressing screening, transition, and our study, Project Adventure. We and our colleagues at Children�s Hospital and the Institute for Community Inclusion were fortunate to have received a grant from the National Institute on Disability and Rehabilitation Research (also known as NIDRR) to create a center to address the following over-arching goal: �To reduce barriers and improve services and outcomes for children and youth with disabilities and special health care needs.� The grant especially targets �children and youth from traditionally underserved communities who have disabilities and special health care needs.� These include families who face linguistic, cultural and/or financial barriers to participation. As you have heard earlier in the day, the grant includes projects addressing screening, transition, and our study, Project Adventure.