Transition to adult services for young people with disabilities: current evidence to guide future research

Authors

  • DEBRA STEWART MSC OT REG

    1. CanChild Centre for Childhood Disability Research and School of Rehabilitation Sciences, McMaster University, Hamilton, ON, Canada.
    Search for more papers by this author

  • ACKNOWLEDGEMENTS
    Funding to support this project was provided by the Ontario Ministry of Health and Long-term Care, the Ontario Neurotrauma Foundation, and the Ontario Children’s Rehabilitation Network. I wish to acknowledge the work and support of the research team involved in the Best Practice Project: Dr Mary Law, McMaster University; Helen Healy, Bloorview Kids Rehab; Jan Burke-Gaffney, Hamilton Family Network; Matt Freeman and Mary Forhan, McMaster University; Dr Nancy Young, Laurentian University; and the late Dr Beverley Antle from the Hospital for Sick Children in Toronto. Beverley inspired us all to support young people with disabilities to achieve satisfying and meaningful lives.

  • CONFLICTS OF INTEREST
    The author declares no conflicts of interest.

Debra Stewart at CanChild Centre for Childhood Disability Research and School of Rehabilitation Sciences, McMaster University, Hamilton, ON, Canada. E-mail: stewart@mcmaster.ca

Abstract

This article outlines the evidence upon which best practice guidelines for transition to adulthood for young people with physical and developmental disabilities were developed in Ontario, Canada, through consensus activities. Evidence was gathered from published and unpublished literature and focus groups with young people, parents, community members, service providers and policy makers across the province. The evidence was then synthesized and analyzed by an expert panel. Guidelines were developed in the areas of collaboration, capacity-building, information, education, and research. This article focuses on the findings of this project as they relate to transition services and care. These best practice guidelines for the transition to adulthood for young people with disabilities offer a starting point to encourage service providers to work collaboratively with young people, parents, communities, governments, and researchers. The evidence from this project supports a move away from purely service-driven models of transition to holistic, lifecourse/lifespan approaches. Recommendations for future study and collaborative knowledge dissemination are provided.

The transition from adolescence to adulthood is an important developmental stage for all young people.1 This period of transition presents particular challenges for youth with disabilities, their families, their medical and rehabilitation teams, and the broader healthcare system.2,3 Young people with disabilities face numerous barriers in achieving autonomy and independence, and they often need support from their family and community to make a successful transition into the adult world.4,5

Almost two decades of study indicate that young people with disabilities and chronic health conditions do not have the same outcomes as their peers on such important domains as health status, academic achievement, interpersonal relationships, community participation, and employment.6,7 The 2005 National Longitudinal Transition Study 2 in the USA found that although young people with special needs entering adulthood had more positive outcomes than they did 20 years ago, the increase was not statistically significant.7

During the transition to adulthood, young people with disabilities are transferred from child- and family-centred systems, such as school and pediatric rehabilitation centres, into adult systems6,8 The importance of adequate preparation for young people with chronic health conditions and disabilities as they move towards adulthood has been identified by a joint consensus statement on health-care transitions released by three American professional bodies representing pediatricians, family physicians, and internists.2 Whereas earlier consensus statements focused on transition from pediatric to adult healthcare institutions,9 recent publications promote a more holistic set of goals highlighting the need for services to maximize lifelong functioning, not just preparation for a new healthcare environment.2,10 Although the idea of a holistic, functional approach to adult transitions for young people with disabilities is now being advocated, there are few guidelines available to guide stakeholders towards this goal.

This article briefly outlines the evidence upon which best practice guidelines for transition to adulthood for young people with physical and developmental disabilities were developed in Ontario, Canada, through consensus activities.11 It offers an evidence-based approach to developing best practice guidelines that can be used by other communities and service systems. The article focuses on the findings of this project as they relate to transition services and care.

The evidence

Best practice guidelines should be based on current evidence. Evidence includes the best available research findings as published in the literature, as well as information about the current practice context and perspectives of consumers/clients.12

The current evidence on transition to adulthood for this project was derived from two primary sources: (1) published/unpublished literature and (2) focus groups and interviews with consumers, community members, service providers, and policy makers from across Ontario.

In the literature, transition to adulthood often refers primarily to a service perspective that views transition as ‘… a dynamic, lifelong process that seeks to meet their (youth with special needs) individual needs as they move from childhood to adulthood.’2 Recent literature, however, acknowledges that transition to adulthood is more than just a service approach, as it involves ‘… a process of gradual adoption of new roles and modification of existing roles’13 for all young people and their families. A holistic, lifelong view of transition is considered an important principle of any service or support for young people with disabilities, and this fits well with current views of family-centred/client-centred practice in child and young people health.13,14

The number of studies about transition services is slowly increasing. Very little evidence is available about the effectiveness of specific models of transition.15,16 Most of the studies about services identify key principles or factors that support the transition process.

The other important sources of evidence are the current practice context (healthcare, clinical circumstances) and consumer/client perspectives. Focus groups and individual interviews with over 130 people from across Ontario were conducted to gather this type of evidence about transition to adulthood for young people with disabilities in Ontario. Participants included young people with disabilities, parents, community members, service providers from numerous service systems (health, social, education, recreation), and policy analysts from five Ontario ministries.

Many key points and recommendations from the focus groups and interviews were found to be consistent with the literature. Successful transition from pediatric to adult services in the areas of healthcare, education, and employment is thought to result from early planning, often in the years leading up to transition to adult services and environments. Programs and resources that facilitate the skills required for young people to function in adult environments should focus on self-determination, problem-solving, and relationship building. Environmental supports, including capacity building in all adult services, are also considered to be important factors for any successful transition. Communication between healthcare providers, educators, policy makers, and community must occur to facilitate seamless, successful transition. Leadership and supports to aid in the transition were identified, as was the need to continue these supports in the adult environment through roles such as case managers, primary care physicians, parent-to-parent networks, community facilitators, and/or peer mentors. Funding ideas that promote flexibility to customize the types of services for each individual, along with promoting flexibility as to where and when the services are utilized, is important. The need for choice in funding models was identified by many people. Finally, many study participants endorsed a more holistic view of transition that would expand to consider the entire lifecourse of an individual and family.

Best Practice Recommendations

A panel of ‘experts’ (young people, parents, community members, service providers, consultants) reviewed all of the current evidence about transition to adulthood for young people with disabilities at a consensus conference. The panelists identified four main areas of recommendations: collaboration, capacity-building, information, and education and research. Within these areas, six guideline ‘themes’ for best practices were written. This article highlights the guidelines related to transition services and care.

Collaboration

Guideline No 1: Collaborative initiatives and policies for transition to adulthood are necessary supports for transition.

  • 1 At the service level, intersectoral collaboration and communication is essential. Transfer between pediatric and adult service systems should start early and involve all services working together, with young people and families.
  • 2 Funding of services should be dependent on collaborative efforts.

Capacity building

Guideline No 2: Building the capacity of people and communities will enhance the transition process.

  • 1 Everyone should work towards ‘an enhanced capacity for empowerment and self-determination and access to advocates or advocacy when needed.’
  • 2 Capacity is more than just traditional skills such as motor or cognitive skills. Capacity includes attributes such as understanding and using one’s abilities, problem solving and decision making, being in control of one’s life and directing others to provide supports. Everyone, including service providers, need to build capacity to promote positive, inclusive adult outcomes for all young people with disabilities.

Guideline No 3: The role of a ‘navigator’ within communities can facilitate the transition journey.

  • 1 An important recommendation that crosses all areas of transition, including services, is the need for community facilitators or ‘navigators.’ These new positions are recommended to be created through multiministry funding, to support young people and families in planning for transition and navigating all of the systems and resources. A key point about the position of a facilitator/navigator is that it needs to be unencumbered, i.e. not affiliated with any service system, but rather be part of the community. In this way, the community will not continue to rely on services to meet the needs of young people with medical conditions and disabilities, but will begin to develop the capacity, with the support of the navigator/facilitator, to be more inclusive.

Information

Guideline No 4: Information, resources, and services need to be accessible and available to everyone involved.

  • 1 The vision stated at the consensus conference was: ‘Every community has a visible, regularly used, accessible location where members of the community can get information on transition.’
  • 2 A single point of access is needed (in the province) for information, resources, networking, and supports along the lifespan. The facilitators/navigators could work from this access point. Transition services and adult services would be part of this information access.
  • 3 All service systems should commit to disclosing, in clear language, information about transition services and evidence of the benefits related to transition.
  • 4 At the service level, there should be a commitment to information exchange among professionals (i.e. service providers as well as those who could benefit from such information) on a regular basis to ensure all information is passed on at appropriate times and in efficient ways.

Education and research

Guideline No 5: Education is a critical component of any transition strategy.

  • 1 Education of all service providers is needed, including physicians, therapists, educators from elementary to postsecondary levels (this should be mandatory), and students being trained as doctors, nurses, physiotherapists, occupational therapists, social workers, and teachers.
  • 2 Educational materials for different audiences should be developed. All such materials should give a vision of future, suggest a way to plan for the future, and offer experiential opportunities for young people.

Guideline No 6: Ongoing research and evaluation provides the evidence needed for success.

  • 1 Any new transition program/service should be evaluated to demonstrate the benefits of the program and show how transition programs can be effective.
  • 2 Larger studies are needed to follow young people over time to learn what works and does not work.
  • 3 Young people, parents, and community members should be at the table as part of the research team.
  • 4 Any transition project should focus on outcomes of participation, quality of life, opportunities, self-determination, self-advocacy, and self-efficacy. Cost-benefit analysis should be included in any evaluation.

This evidence-based approach to developing best practice recommendations and guidelines ensures that services and supports are based on current ‘best evidence.’ It acknowledges that evidence is a combination of published studies and literature and of information about the current practice context and consumer/client perspectives and interests. On examination, the guidelines are also applicable to other ages and stages of persons with disabilities throughout their lifecourse. The full text of these guidelines are now available on the CanChild website at http://www.canchild.ca. At this stage, these guidelines provide opportunities for ongoing investigation. They can be used and adapted by any service or system for pilot testing, demonstration projects, and evaluation.

Future Investigation in this Area

Our current knowledge about transition to adulthood and lifecourse approaches in general for young people with disabilities is at a ‘component’ level: we know a lot about the different components or elements that contribute to a successful transition. We do not yet know which combination of components will make the most difference. This should be the focus of research now. For example, a service could focus on capacity building of young people, parents, and community members together. A multidimensional, mixed-methods approach to evaluation of this type of service would probably be needed. Of interest, a recent article by Van Naarden Braun et al.17 challenged us to look beyond individual impairment to study environmental and activity influences on transition to adult life. They used a multidimensional approach to examine a number of factors influencing adult social-role attainment for young people with developmental disabilities, and concluded that childhood impairment alone does not contribute to a person’s difficulties during the transition into adult roles. The authors suggested that interventions to reduce activity limitations and strategies to increase attendance in postsecondary education may increase the likelihood for the acquisition of adult social roles among young adults with childhood impairment. It is recommended that medical and rehabilitation services look beyond the traditional outcomes related to body structure and function to these critical life events and social roles at the activity and participation level of functioning.

The evidence from this project supports a move away from purely service-driven models of transition to holistic, lifecourse/lifespan approaches.18 Persons with disabilities go through numerous transitions throughout their lives, and services that address all aspects of a person’s lifespan have been recommended in the literature and by persons with disabilities. Researchers should bear this holistic functional approach in mind if future scientific investigation is to be meaningful.

One of the critical recommendations regarding any future investigation in this area is knowledge dissemination. It is not enough for separate groups to implement and evaluate new programs. One of the main barriers to future evidence-based practice is the silo approach to both service delivery and research that still exists. Collaboration was the number-one recommendation of this project, and it is needed at all levels if we are going to move forward. The most effective way for all of us to build evidence and develop strong transition services and supports is to share our evidence. A vehicle for knowledge sharing and dissemination is needed for transition to adulthood. The American Academy for Cerebral Palsy and Developmental Medicine could play a role in this, as could other key stakeholders, which should always include young people and representatives of parent groups.

In conclusion, evidence-based guidelines for best practice in the area of transition to adulthood for youth with disabilities offer a starting point to encourage service providers to work collaboratively with young people, parents, communities, governments, and researchers, to learn from each other, and to continue to develop our knowledge base. The evidence from this project indicates that no one person, service, or system can effectively address the complexity of the transition to adulthood and the many issues facing persons with lifelong disabilities such as cerebral palsy. Through collaboration, we can build the capacity of everyone involved to ensure a successful transition to adulthood for all young people.

Ancillary