Impact Feature Issue on Aging and People with Intellectual and Developmental Disabilities

Preparing for retirement and later life years is a natural part of growing older. Most people make financial plans, complete legal documents, consider their health care plans, and share wishes with loved ones. But this planning process can be more complex for people who have intellectual or developmental disabilities and their families. The Lifetime Assistance Program of Arc Greater Twin Cities was developed in response to this very concern, and it provides an example of an innovative planning process.

Responding to a Need

A few years ago Arc saw a growing number of older adults with disabilities who were being impacted by inadequate planning. While each situation was unique, the outcome experienced was often the same -- crisis that could have been avoided with proper comprehensive planning. In partnership with the Research and Training Center on Community Living at the University of Minnesota, Arc collected information from family members and service providers in Minnesota to identify the needs of families as they prepared for the future of their adult member with a disability, and to determine how they could best be supported in this process. The information was collected through focus groups and surveys with parents of adults age 40 and older who have intellectual or developmental disabilities. Eighty-two percent of the families surveyed indicated a need for help with financial planning, and only 22% were satisfied with current case management. The families wanted long-term help for consistent, quality services. Based on these findings Arc Greater Twin Cities launched the Lifetime Assistance Program in 2006.

Program Overview

The Lifetime Assistance Program is designed to help people with disabilities and their families plan for their later life years. It offers a new approach that combines future life planning and ongoing caregiving support. The program uses a person-centered process that results in increased understanding of the future needs of the individual with a disability, assists with legal and financial preparations, and plans for the social supports that contribute to quality of life.

The program is offered in the Twin Cities metropolitan area to individuals and families at many different stages of life -- from toddlers to aging adults with disabilities. While each family and individual brings unique concerns, they are able to create a solid plan for what they want and need in the future. The process takes 12 months to complete, and throughout that time participants receive assistance with developing a Lifelong Support Plan for their family member with a disability; access to financial, legal and estate planning for a sound, secure future; and the support of a Quality of Life specialist.

Quality of Life Planning

A good person-centered planning process is one of discovery and exploration. Arc staff facilitate conversations that identify and uncover the details that define a good life for the individual with a disability. It is often the only time the individual and his or her support network have sat down to discuss, dream, and create a plan for a fulfilling future. That plan includes identifying who will take over the responsibility of overseeing support services, and prepares family members for that responsibility.

In the event that there are no family members to assume this responsibility, or when the family would like additional support, a Quality of Life Specialist can be hired. The Quality of Life Specialist becomes a substitute advocate who provides much of the same type of monitoring of supports and services that parents or family members provide. The family and individual with a disability decide the degree of oversight the specialist will have and how this will take place. Quality of Life Specialist services are fee-based services that can begin whenever the family feels they are no longer able to provide the support they would like to provide. Many families choose this service as a way to assist a sibling or other relative to take on the role of overseeing services to their family member with a disability.

Legal and Financial Planning Assistance

The Lifetime Assistance Program works with qualified attorneys and financial planners who understand the unique needs of families who have members with disabilities. Education and assistance is provided to the family members to ensure that the legal documents and financial plans are in place to safeguard an individual's future and support the goals identified in the person-centered plan. The team develops the wills, trusts, health care directives and financial plans needed to provide for the future security and happiness of the family member with a disability.

Pulling It All Together

The results of these components are personal plans, legal documents, and financial preparations that are coordinated and complement one another in an overall Lifetime Support Plan. The Lifelong Support Plan is a comprehensive, individualized, future-oriented document that provides a framework for future services and supports based on the needs, wishes, and dreams of the person with a disability and his or her family. In addition to identifying a vision for the future, the Lifelong Support Plan provides information about existing formal and informal supports; identifies what supports are needed above and beyond what is offered through the existing service system, including requested Quality of Life Specialist services; and the timeline for providing these services. The services outlined in the plan help families cover the gaps that will exist when primary caregivers are no longer able to oversee quality of life; it integrates existing documents and works in concert with guardians to help ensure the person is well supported. This proactive planning process is designed to strengthen the person's safety net, ensure continuity of care, and as a living document recognize and respond to the changing needs of the person as he or she ages. The plan is adjusted as needed, and is formally reviewed and updated at least annually.

The Lifetime Assistance Program provides a great sense of relief to aging family members who can now be comforted that they have made the plans and taken action to prepare as much as possible for the life of their adult member with a disability. For the 60 families who are currently engaged in the process at various stages, it ensures a solid framework for future supports and services, and can lead to increased satisfaction in later life years.