The Arc of the United States October 15, 2001, Aspen CO for The Coleman Institute for Cognitive Disabilities

A Half-Century of Change In 1950, medical professionals frequently advised families to put children with disabilities “away” in state run institutions There were few options for families. Shame was a big factor in everyday life. The Post WWII spirit of optimism allowed families to gather together.

A Half-Century of Change The first convention of the National Association of Parents and Friends of Mentally Retarded Children was held in 1950 in Minneapolis Federal Program of Action for America’s Retarded Children and Adults was presented to Congress (1956).

A Half-Century of Change Significant legislation, calling for Federal-State partnerships was enacted between 1963-Present. Most of this legislation married rights protections with implementation of new knowledge and scientific advances. Rights, without the supports to exercise those rights, are not rights at all.

Protecting Rights The Arc helps to craft and implement key pieces of legislation including the American’s with Disabilities Act (ADA) and Individuals with Disabilities Education Act (IDEA)

A Half-Century of Change Today, our constituents live, learn, work and play in the community. Our constituents are increasingly speaking for themselves. Like other groups in our society taking action to help each other. Parents are proud of their kids. There is still much work to be done.

Our Beliefs We believe that all people with mental retardation and related developmental disabilities have inherent value, strength, and ability. Each of these individuals has the fundamental right to live, learn, work and worship in the community of their choice. Yet physical, emotional and social barriers limit their potential and acceptance by society.

Our Mission The Arc of the United States improves the quality of life for all people affected by mental retardation and related developmental disabilities through education, research and advocacy and prevention. The Arc will strive to eliminate barriers and foster the acceptance and inclusion of people with mental retardation and related developmental disabilities.

Our Values People First Democracy Visionary Leadership Community Participation Diversity Integrity and Excellence

The Arc of the United States Has touched millions of lives across the United States since 1950 Protecting Rights Holding Hands Spreading the Word Finding the Answers Being Part of the Community

Holding Hands The Arc provides information and support to families throughout the span of life. The partnership opportunities with all of you is enormous. With a network of local chapters in all 50 states, families have support at the local, state and national levels.

Spreading the Word The Arc heightens awareness of the preventable causes of mental retardation. The Arc also works diligently to expand awareness of the abilities of people. Awareness creates more welcoming communities.

Being Part of the Community Local chapters of The Arc offer a myriad of services  Advocates and mentors provide information and support  Early intervention services  Supported and group living  Job placement & supported employment  Case management  Recreation  Respite Care

Our Members Matter Our membership includes self- advocates and families. We are governed by our membership. We are NOT a top- down organization.

Finding the Answers The Arc plays an important advocacy role in research regarding our constituents. Advocacy for research funding is vital for expansion. We need to know from you where advocacy is needed.

Our Position Statements The Arc has developed position statements addressing various issues related to rights, treatment, services and programs for children and adults and their families. Positions describe what The Arc believes on critical issues. The Arc's local, state and national officers, staff, committees and members use them to plan, operate and evaluate programs and policies.

Our Position Statements They also use them in making public statements to the media and others interested in The Arc's positions on current issues. The consistent use of these positions enables The Arc to advocate effectively as one voice throughout the nation.

Challenges facing families in the 21st Century Despite enormous progress, the gains are uneven. Many families have little support. The quality of supports and services is highly variable. Most adults are not productively employed. There is no private marketplace.

Challenges, cont. Being the parent of a child or adult with a cognitive disability is not a spectator sport. Despite the explosion of information and technology, most people still do not know. Mainstream institutions still discriminate.

The greater your dependence on others, the fewer choices and opportunities you have. The labor force demographics work against us. The cohort of potential caregivers is the smallest % of our population in history. Technology is a vital part of the solution.

Parents of children with cognitive disabilities and adults with cognitive disabilities Don’t have the same choices as everyone else. If you are a person with a cognitive disability, the quality and availability of services and supports you receive are are eligible to receive (you get to wait in most cases) is more dependent on….

He was never intended for this purpose!

Families… Need reliable and accurate information, and the research community has failed to disseminate what it knows. Need professionals that understand the complexity of various funding sources and how they inter-relate. Need honest answers to the questions that keep them awake at night. Need support to help them do their jobs.

Keys to Success Dissemination, Dissemination, Dissemination. Information, information, information. Understand the marriage of science and civil rights. Learn what is available in different states through TheArcLink.org Learn about our position statements.

Hypocrisy is running rampant in Washington ! This should surprise no one At the same time they are talking about the New Freedom Initiative, and CMS is spending hundreds of millions of $ to support and assist states… The Department of Justice is taking sides with states to try and take away the power of Olmstead.

Hypocrisy, cont. The New Freedom Initiative has IDEA as a cornerstone, and Congress and the Administration are working to weaken the law’s protections. The Family Caregiver Support Act excludes people over 18. The Health Insurance Flexibility and Accountability Act allows states to take away services to all people with disabilities.

Hypocrisy, cont. Managed Care Regulations that were years in the making and contained many compromises were withdrawn at the last minute, weakening protections for people with disabilities.

Where we are in There are some problems in community-based services, though they pale in nearly all circumstances, when compared to those faced by people in large congregate settings, both in years past and today. Special Education has become controversial and no one is happy.

“Things are not as they were” A big difference is that the problems in the community are very visible, and that visibility will help to improve the service. The visibility, however, should not be confused with pervasive and systemic problems in the field. Neither can we sit back and think everything is OK.

What’s at Stake? Risk losing gains we’ve made over the past 20 years. Fuel arguments against community alternatives to institutionalization. Re-segregate people. Put people with disabilities at risk Lose the confidence of families

The Coleman Institute and The University of Colorado can lead the next revolution. To be a revolutionary you have to be a human being. You have to care about people who have no power. Jane Fonda

The Coleman Institute and The University of Colorado can lead the next revolution. The current revolution was championed by a famous political family. The next revolution will be championed by another family, from the center of the technology revolution, sitting in this room.

We have promised so much…. And we cannot fail to deliver on those promises.

Families Need this Partnership

If not us, then who?

Keeping our Promises Transformation from what was to what could be.