Graphic: Charting the LifeCourse Circle

The Charting the LifeCourse framework was originally developed BY families FOR families by the staff and stakeholders of Missouri Family to Family. Missouri Family to Family is housed within Missouri’s University Center for Excellence in Developmental Disabilities Education, Research and Services (UCEDD) at the University of Missouri–Kansas City Institute for Human Development.

Graphic: LifeCourse principle icon - All
Graphic: Charting the LifeCourse Family icon (a purple circle with a group of 5 people in the center, the person in the middle is brightly colored, the others are faded out)
Graphic: A trajectory with an arrow pointing up and a dotted arrow pointing down, symbolizing a negative trajectory. The life stage icons are across the bottom.
Graphic: The LifeCourse domain icons stacked
Graphic: Three buckets, one blue (Discovery & Navigation); one orange (to the left - Connections and Partnerships); and one green (Goods & Services) | Charting the LifeCourse Framework history
Graphic: Integrated Supports Star with no labels

The Charting the LifeCourse resources, tools and training materials are developed to be adapted to meet a diverse array of needs and purposes, such as:

  • Specific Target Audiences:
    • Persons with I/DD and their families
    • Support coordinators or plan facilitators
    • Educators/teachers
    • Employment providers
    • Health care professionals
    • Direct support professionals
  • Dissemination Strategies:
    • One-on-one, small or Large Group
    • Interactive or speaker format
    • Print, video or live versions
    • Varying length and purpose depending on target audience

Specific Areas of Skill Enhancement

Persons with I/DD and
Family Members
Professionals Organizations and Systems
  • Learn and Explore possibilities
  • Problem-solving and Life Trouble Shooting
  • Navigating and Planning the Good Life
  • Directing Services and Supports
  • Advocating for Change
  • Mentoring Other Families
  • Educating others on possibilities
  • Facilitate planning for now and the future
  • Problem-Solving
  • Coordinating Integrated Services and Supports
  • Conflict Resolution and Advocacy
  • Reframing Expectations at All Levels
  • Training and Coaching Staff
  • Driving Policy Change
  • Organizing Framework
  • Strategic Thinking Guidance

Through the work of the National Community of Practice for Supporting Families of Individuals with I/DD, the Charting the LifeCourse Framework continues to evolve, and be validated.

History of Charting the LifeCourse Framework and Tools

As the service system evolves and moves from its historical design of providing institutional care to a system that supports self-determination, freedom and choice for people with disabilities, it is imperative that we recognize and support the significant role that families play throughout the lifespan. We must remember that families are and have always been the constant in our everyday lives and the social fabric of our country. Despite the service system and society’s response to disability, families’ commitment and love for their family members with intellectual and developmental disabilities (I/DD) has not waivered.

In 2011, a diverse group national and state family support leaders and stakeholders met during a three-day intensive conference held at the Johnson Foundation’s Wingspread Conference Center in Racine, Wisconsin to develop the National Agenda for Supporting Families with a member with I/DD that proposed a new structure for implementing supports and services that would enhance the lives of families based on the current reality and expectations of service and supports. A key outcome of the gathering was the development of the following proposed definition of family support that is being utilized across the nation to guide policy and practice changes:

To support families, with all their complexity and diversity, in ways that maximize their capacity, strengths and unique abilities so they can best support, nurture, and facilitate the achievement of self-determination, interdependence, productivity, integration and inclusion in all facets of community life for their family members.1

The following table highlights the key areas that National Agenda proposed as the foundational concepts of supporting families that differed from the field’s traditional understanding of family support.

Evolving Family Support to Supporting Families

Specifics Traditional Family Support Supporting Families
Who Defines Defined by service system as a billable service or eligibility criteria Defined by self-advocates, families, the disability service system, and other stakeholders
Who Benefits Focus on caregiver or parent Focus on family unit.  Membership defined by family.
Self-Determination Tension between self-advocacy and family support Family support enhances opportunities for self-advocacy and self-determination
Focus of Support Crisis, immediate response Preventative, long-term futures planning
Goal Supporting caregiver in order to decrease demand on long-term services Quality of life for person with ID/DD and their family in the community with supports needed for the best possible life

Graphic: Three buckets, one blue (Discovery & Navigation); one orange (to the left - Connections and Partnerships); and one green (Goods & Services) | Charting the LifeCourse Framework history

Specific Strategies for Supporting Families

Information and
Training Supports:
Knowledge & Skills
Emotional Supports:
Mental Health
& Self-efficacy

Instrumental Supports:
Day-to-Day Needs

  • Information on disability
  • Knowledge about
    best practices
    and values
  • Skills to navigate and
    access services
  • Ability to advocate
    for services and
    policychanges
  • Parent-to-parent support
  • Self-advocacy organizations
  • Sib-shops
  • Support groups
  • Professional counseling
  • Non-disability support
  • Respite/Childcare
  • Adaptive equipment
  • Home modifications
  • Financial assistance
  • Service coordination
  • Cash subsidies
  • Person/family-centered planning

In response to the recommendations outlined in the National Agenda for Supporting Families, the Administration on Intellectual and Developmental Disabilities (AIDD) funded the National Association of State Directors of Developmental Disabilities Services (NASDDDS) in partnership with University of Missouri Kansas City Institute on Human Development (UMKC IHD) and Human Services Research Institute (HSRI) to host the National Community of Practice for Supporting Families of Individuals with Intellectual & Developmental Disabilities. Starting in October 2012, six states joined together to develop systems of support for families throughout the lifespan of their family member with I/DD.  The goal was to identify and scale up innovative supporting families policy and practice.

In the first year, stakeholders from across the nation refined the guiding principles based on the National Agenda and identified the following key areas that guide the work:

  • People with disabilities and their families are active and valued participants in their community. 
  • Family is a part of a person’s life throughout their lifetime so that children have the opportunity to grow up with their family and as adults to have family in their lives and even create their own family.
  • People with disabilities and their families have enduring and stable relationships with family members, friends, partners, co-workers, neighbors, and others.
  • People with disabilities and their families offer and receive support from each other and others in their community to enhance the well-being of all. 
  • People with disabilities and their families have access to an array of resources and supports that enhance individual lives and maintain the family well-being.

During this same time period, Missouri Family to Family, housed at UMKC Institute for Human Development, was developing the Charting the LifeCourse resources. Based on the life course health development model (HRSA), the LifeCourse framework utilizes a socio-ecological model that focuses on life stages and the impact of transitions, events, and experiences across an individual’s lifespan trajectory.  The resources were developed to help families understand the importance of focusing on life experiences across the lifespan, as opposed to focusing solely on formal disability specific supports.  Professionals were encouraged to use these resources to provide anticipatory guidance towards quality of life outcomes when supporting people with I/DD and their families.  ‘Anticipatory guidance’ is a common term used to refer to providing information and education of what to expect over the next few months or across the lifespan to the future.

The Charting the LifeCourse resources both informed and were informed by the key principles of the National Community of Practice and simultaneously worked together to formalize the framework, which in the developmental disability field is often referred to as the LifeCourse framework.

Charting the LifeCourse Framework Principles and Key Components

Guiding Principles Key Framework Components
  • Fosters self-determination and quality of life of persons with I/DD and their families
  • Focuses on the strengths, capacity and diversity of the person within the context of their family
  • Enhances life experiences that promote a trajectory towards quality of life outcomes
  • Helps persons with I/DD and their families ENVISION and PLAN FOR POSSIBILITIES and dreams before crisis, life-transitions and future
  • Supports the informational, emotional and day-to-day support needs of all family members*
  • Utilizes INTEGRATED supports within and outside of formal disability specific services
  • Can help to CHANGE EXPECTATIONS of role and responsibility of service system,
  • Potential to LESSEN THE FREQUENCY AND LONG-TERM NATURE of crisis services
  • Builds on the strengths and contributions of persons with I/DD, their families and the community
  • All level of change is driven by the person with I/DD and/or their family in partnership with others
  • Focusing on All
  • Right to Live, Love, Work and Play
  • Person within context of the family
  • Quality of Life Outcomes and Domains
  • 3 Buckets of Support
  • Life Experiences and Trajectory
  • Integrated Supports Star
  • Person-/Family-Driven Policies

The state of Missouri is the demonstration state in the Community of Practice for Supporting Families of Individuals with I/DD with the learning being shared with not only the five states in the CoP, but also the entire nation. Each state formed a team that was facilitated jointly by the state Agency on I/DD and the state Council on Developmental Disabilities with additional membership from self-advocacy and family organizations, university, education, aging and other organizations with a vested interest in supporting families.

The Missouri CoP team formed the Missouri LifeCourse Tools & Practice Workgroup to develop new LifeCourse tools as needed, coaches professionals who are using the tools, continuously improves tools based on feedback, and provides guidance to organizations on implementing the framework.

The Charting the LifeCourse framework serves as the foundation for the development, implementation and dissemination of all the Charting the LifeCourse resources.  It is critical that people understand the framework when engaging with the tools at any level, whether a parent is using the educational materials to become more informed or a facilitator is helping an organization with strategic thinking.

Graphic: Image outlines process of developing LifeCourse products

How LifeCourse Materials and Tools are Developed

  1. GATHER INFORMATION
    Engage stakeholders
    Review literature & existing resources
  1. DEVELOP LIFECOURSE TOOLS / RESOURCES
    Based on review of literature & input of stakeholders
  1. & 4. STAKEHOLDER INPUT & REVISE
    Review & revise drafted resource based on input from stakeholders
    Pilot-test resources
  1. Make Resource Available
    Training
    Broad dissemination

To stay up to date with how the LifeCourse is being used in the National Community of Practice for Supporting Families, please visit supportstofamilies.org.

[1] Hecht, E., Reynolds, M., Agosta, J., & McGinley, K. (2011). Building an agenda for supporting families with a member with intellectual and developmental disabilities. Report of the Wingspread Conference on building a family support agenda, March 6-8, 2011. Racine, Wisconsin: Johnson Foundation