Description: The overall goal is “to empower individuals with developmental disabilities, special healthcare needs, mental/behavioral health needs, and age/illness related cognitive issues, and their families to make informed guardianship decisions.” The project provides training on alternatives to guardianship to ensure that people with disabilities, mental illness and addictions; and older adults, and their families, who are considering guardianship, are aware of the guardianship options and alternatives available to them. The training also focuses on increasing understanding about the impact of guardianship on the human and civil rights of individuals. The project is a joint effort between MO’s University Center on Developmental Disabilities (implementation); the MO Developmental Disability Council (providing the majority of the funding); MO Protection and Advocacy (providing legal, technical assistance); and Pathways, a mental health provider on behalf of MO’s Division of Mental Illness, who is providing the rest of the funding.
Ben is 24 years old and uses several alternatives to guardianship to provide decision making supports, enabling him to learn and practice new skills and be included in all aspects of community life. It also gives the family peace of mind that Ben will have the supports he needs in the future.
Project Contact: Vim Horn, 816.235.1756, hornw@umkc.edu and Jane St. John, 816.235.5684, stjohnj@umkc.edu
Project Period: 2013-2015
Annual Funding: $45,000 (over 18 months)
Funding Source: Missouri Council for Developmental Disabilities (MCDD), Pathways
Core Functions
Applied Research: IHD evaluates the understanding of individuals with disabilities, family members and supporters, and professionals in the disability, aging, or mental health fields regarding guardianship options and alternatives pre and post presentation. The knowledge gained about alternatives and options and how to access them is also evaluated. Workshop participants are surveyed 9 months post attendance to evaluate change in attitudes and practices.
Community Services and Supports: The primary purpose is to promote the use of alternatives to guardianship, which supports the inclusion of people with disabilities in the community in ways that they choose and determine. By providing knowledge of alternatives to guardianship and how to access alternatives, individuals with disabilities are more likely to retain these fundamental rights and live and be supported in ways that they choose in the community. In addition, individuals who currently have a guardian, but don’t want one or don’t need one, gain knowledge about how to seek restoration of their rights.
Information Dissemination: All workshop attendees receive the project materials, including the Resource Guide, the Stoplight Tool, and other handouts. These materials are also maintained and disseminated through the Missouri Family to Family Resource Center and website. There is also an online workbook that can be accessed by individuals, families and professionals. Professionals receiving the information include support coordinators, teachers, public administrators, mental health liaisons, and other supporters from the disability, mental health, aging, and education fields. In addition, trained facilitators are prepared to offer the information using an interactive process based on the recorded webinar and key activities of the workshop.
Interdisciplinary Personnel Preparation: Individuals are often advised about guardianship issues by professionals with roles in the disability, mental health, aging, and school settings. This project seeks to educate professionals about the legal ramifications of guardianship and the alternatives to guardianship so they can be better equipped to serve families who are experiencing concerns about decision making supports. Family Support Coordinators with the Division of Developmental Disabilities are trained and knowledgeable about guardianship options and alternatives, to be able to help families and support coordinators with the Division and the County Boards to better serve families.
Program Need and Historical Context: Historically, there has been a belief that just because someone has a disability (especially a developmental disability), he or she will need a guardian when they are an adult. In reality, everyone is presumed competent to make choices about their own lives when they are age 18 or older, unless a court says otherwise. Parents of youth approaching the age of 18 are often advised to get a guardian to protect their son or daughter. Guardianship is a legal action that limits or denies a person’s rights and freedom to make choices and decisions that define us as human beings and determine quality of life. With the right supports, many people with disabilities are able to remain “their own person,” making their own decisions and being in charge of their own lives.
Consumer and Community Involvement: Throughout this effort, input has been obtained from individuals with disabilities and their families, on the content of the training and resource materials.
Significant Project Activities and Outcomes
- To educate people with disabilities, special healthcare needs, mental/behavioral health needs, and age related cognitive issues, and their families about guardianship alternatives and how to access them and about guardianship options and the legal ramifications of having a guardian on an individual’s ability to make decisions and be included in the community
- To educate community, county and state agency professionals that provide services and supports about guardianship alternatives, and the legal ramifications of guardianship
- To educate about the process for restoration of rights of individuals who currently have a guardian
- To educate individuals, families and professionals on the use of limited guardianship if no alternative can be found to meet the specific need for decision making support and protection
Institute’s Role: The Institute conducts informational workshops at locations within each of the Department of Mental Health, Division of Developmental Disability’s eleven regions throughout the state. IHD staff partner with the Division of Developmental Disabilities, Division of Behavioral Health, the Missouri Developmental Disabilities Council, and the Division of Aging to encourage attendance at workshops by individuals, families, and professionals. Information is also shared at conferences and with special interest groups. The Institute develops and maintains all training materials and products, and develops and administers pre/post tests and follow up surveys.
Products
- Missouri Family to Family website includes Guardianship Options/Alternatives information and products
- Resource Guide
- Tool for Identifying Areas of Need for Decision Making Support (Stoplight Tool)
- Facilitator’s guide and materials (to sustain the ability to have workshops for individuals, families, and professionals once the project has ended)
- Other handouts (options and alternatives, quick info sheet)
- Online workbook (includes interactive quizzes, videos, etc.)
- Workshop Webinar (archived on the Missouri Family to Family)