The Arc of the United States

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The Arc of the United States

• October 15, 2001, Aspen CO
• for
• The Coleman Institute for Cognitive Disabilities

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(No Transcript)
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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.

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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 Americas Retarded
  Children and Adults was presented to Congress
  (1956).

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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.

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Protecting Rights

• The Arc helps to craft and implement key pieces
  of legislation including the Americans with
  Disabilities Act (ADA) and Individuals with
  Disabilities Education Act (IDEA)

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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.

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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.

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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.

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Our Values

• People First
• Democracy
• Visionary Leadership
• Community Participation
• Diversity
• Integrity and Excellence

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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

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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.

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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.

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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

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Our Members Matter

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

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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.

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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.

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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.

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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.

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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.

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• 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.

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Parents of children with cognitive disabilities
and adults with cognitive disabilities

• Dont 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.

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He was never intended for this purpose!
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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.

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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.
• www.TheArc.org

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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.

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Hypocrisy, cont.

• The New Freedom Initiative has IDEA as a
  cornerstone, and Congress and the Administration
  are working to weaken the laws 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.

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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.

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Where we are in 2001.

• 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.

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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.

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Whats at Stake?

• Risk losing gains weve 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

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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

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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.

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We have promised so much.

• And we cannot fail to deliver on those promises.

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Families Need this Partnership
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If not us, then who?
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• Keeping our Promises
• Transformation from what was to what could be.