Thirtieth Anniversary Issue on Progress and Priorities in Direct Support

How has Advocacy Changed?
30 Years of Progress in the Disability Movement

Authors

Georgann Rumsey is a Program Design and Rate Mentor at Mains’l Services in Minnesota. Georg can be reached at gdrumsey@mainsl.com.

Katie McDermott is an Advocate Associate at The Arc Minnesota in Minneapolis, Minnesota.

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Mother and son in kitchen with laptop.

Over the last 30 years, the disability movement has changed in important and lasting ways. In the past, parents were often the main decision-makers and advocates. Today, people with disabilities are leading their own lives and speaking up for what they want.

At the same time, parents and siblings continue to play key roles by supporting independence, helping plan for the future, and working with professionals. Together, these three groups—self-advocates, parents, and siblings—have helped build a stronger, more inclusive system focused on choice, dignity, and being part of the community.

Self-Advocacy: People Leading Their Own Lives

One of the biggest changes has been the growth of self-advocacy. This means people with disabilities speak for themselves and make their own choices. A guiding motto of this movement is: “Nothing about us without us.” In other words, decisions should never be made without including the person.

Over the last 30 years, the focus has shifted—from speaking for people to supporting people to speak for themselves.

Self-advocates have helped move services away from institutions and into the community. More people now live in their own homes, work real jobs, and take part in everyday life. They have also played a key role in protecting important rights, including voting, self-direction, and making personal decisions.

Self-advocates have also built strong organizations and leadership programs. Adults and youth are learning how to speak up, lead groups, and support others. Today, their voices help shape laws, services, and community programs.

Key milestones and issues are described here.

More People Living in the Community

  • Olmstead v. L.C.: This decision helped people move out of institutions and into homes in the community.
  • Ending segregation: There has been a strong push to move away from sheltered workshops and separate programs toward real jobs and full inclusion.
  • Remembering with Dignity: Advocacy efforts to teach the history of treatment of people with disabilities. They honor people who died in institutions by sharing their stories and placing names on unmarked graves. Minnesota self-advocates helped lead this work.
  • Americans with Disabilities Act (ADA) Amendments (2008) This federal law expanded protections against discrimination.
  • Supported Decision-Making (SDM): This approach helps people make their own choices with support, instead of relying only on guardians.
  • Self-direction and trauma-informed services: These approaches focus on understanding a person’s experiences. It supports safety, trust, and working together. It asks, “what has happened to this person?” instead of “what’s wrong?”
  • Voting rights: These ongoing efforts ensure people with disabilities can vote and take part in elections.

Growing Leadership and Influence

  • National and state organizations, like Self Advocates Becoming Empowered and Self-Advocates Minnesota, continue to build leadership.
  • Youth programs are preparing the next generation of advocates.
  • Students are learning self-advocacy skills earlier, especially during school transition planning.

Raising Awareness and Expanding Inclusion

  • Training tools help people build advocacy skills.
  • Disability Pride events promote respect and belonging.
  • Access to work continues to improve access to jobs and supports.
  • More voices are being included with attention given to diverse experiences, including race, income, and justice system involvement.

Parent Advocacy: Supporting Independence and Transition

Parent advocacy has also evolved over time. In earlier years, parents focused on securing basic rights such as access to education, healthcare, and services. As those rights became more established, the focus began to shift.

Good support starts with listening. The person you support should always lead their own choices.”

Today, many parents work to support their children in becoming more independent. This includes planning for adulthood—jobs, education, and life in the community. Parents also play an important role as partners with providers, helping shape services, and making long-term plans.

Many families now focus on “family empowerment,” which means having a voice, choice, and active role in self-direction and decision-making.

Making Sure Rights Are Followed

  • Americans with Disabilities Act (ADA) Parents helped make sure this law was followed. They pushed for equal access to schools, jobs, transportation, and public places.

Supporting Self-Advocacy

  • Parents are no longer the only voice. They now support their children in speaking for themselves.
  • The People First movement helped promote the idea that people with disabilities should be in charge of their own lives.

Transition to Adulthood

  • Parents focus more on what happens after school.
  • People emphasize getting jobs, education, and living in the community.

Inclusive Education

  • Individuals with Disabilities Education Act (IDEA) is a law that supports students in school.
  • Parents help develop IEPs (individualized education programs).
  • Students with disabilities learn alongside other students as much as possible.

Supporting Community Living

  • Families helped move services out of institutions and into the community, with a focus on choice and independence.

Family Empowerment

  • Families and providers work together to create meaningful supports.

Ongoing Challenges

  • Employment gaps remain for people with disabilities.
  • Employers and communities need better understanding of people’s experiences, barriers, and desires to participate.
  • Systemic barriers to fair and equal services remain.
  • There is a lack of direct support professionals needed to support people. Families are often expected to provide care, which can create financial stress and impact daily life.

Sibling Advocacy: Lifelong Support and Future Planning

Sibling advocacy has grown significantly over the last 30 years. In the past, siblings were often overlooked. Today, they are recognized as important, lifelong supports.

Many siblings help plan for the future, especially as parents age. Some are part of the “sandwich generation,” balancing their own families while also supporting a brother or sister with a disability.

Sibling networks and organizations have expanded, creating opportunities to connect, share experiences, and learn from one another. Siblings also play a growing role in advocacy efforts, helping improve systems and promoting inclusion.

Their perspective is unique. Many siblings work closely with their brother or sister to support independence, shared support, and long-term stability.

Growing Support and Connection

  • The Sibling Support Project offers workshops and resources to support siblings of all ages.
  • Online and in-person communities provide connection and support.
  • The Sibling Leadership Network promotes advocacy and leadership.

Lifelong Roles and Responsibilities

  • Siblings often provide long-term support.
  • Many of them help plan for housing, services, and finances.
  • Siblings often balance caring for their own families while also supporting their brother or sister.

Stronger Voices

  • Siblings are now included more often in planning and decision-making.
  • Their valued perspective helps shape services and supports.
  • They work alongside their brothers or sisters to support choice and independence.

Advocacy and System Change

  • Siblings are increasingly involved in discussions about laws, services, and supports.
  • Key focus areas include housing, financial planning, and decision-making supports.
  • They continue to advocate for community living, jobs, and equal opportunities.

Looking Ahead

  • Siblings are learning from each other and building stronger networks.
  • Stronger networks continue to grow at local and national levels.

Why This Matters for DSPs

Understanding these changes helps DSPs provide better support every day. The person you support should always be at the center of decisions. Your role is to support their choices, build skills, and promote independence.

Families and siblings are important partners. They bring valuable knowledge, history, and long-term commitment.

DSPs may be unsure who is making decisions, especially when culture and family roles are important. It is important to ask questions and learn how each family makes decisions.

By supporting self-advocacy, respecting family roles, and promoting inclusion, DSPs help create a system where people with disabilities can live full and meaningful lives in their communities.

Sources and Organizations