Post on 28-Jun-2015
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~~ Real Lives ~~Human Aspirations
Common to All Americans
Massachusetts Families Organizing for Change
Implementing a 21st
Century Disability Policy The mission of the
Massachusetts Alliance for 21st Century Disability Policy (MA21)
is to advance full community participation for individuals with disabilities.
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MA21 Partnership Massachusetts Families Organizing for Change (MFOFC)
The Arc of Massachusetts (Arcmass)
Massachusetts Advocates Standing Strong (M.A.S.S.)
Massachusetts Developmental Disabilities Council (MDDC)
Advocates for Autism of Massachusetts (AFAM)
Massachusetts Down Syndrome Congress (MDSC)
Disability Law Center (DLC)
Massachusetts Sibling Support Network
Federation for Children with Special Needs (FCSN)
More partners joining every day…
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MASSACHUSETTS HISTORY OF ACCOMPLISHMENTS
IN THE FIELD OF DISABILITIES
• THE 50’S: The Dawn of Hope
• The 60’s: Parents find their Voice
through the Arc
• The 70’s: Humanity Prevails
• The 80’s: Great Strides Forward
• The 90’s: Family to Family
• The 2000’s: Family Support
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MA21 Policy is intended for:• Individuals• Families• Elected officials• Other policy makers
Intent is to create a consensus on a unified framework to view and improve
public policy for individuals with disabilities and their families
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“Disability Is Natural”
A happy family is but an earlier heaven.-- John Bowring
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“Disability is Natural”• More than a saying• Guide to how people with disabilities and their
families would like to interact with the world• How we would like the world to interact with us• Same opportunities as anyone else
o Access to educationo Medical careo Social activitieso Employment opportunitieso Transportation options
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The individual is first and foremost…
• With own individual cultures, tastes, emotions, wants, needs, and opinions
From the moment a disability is diagnosed, people with disabilities and their family are treated differently.
• Lay people• Best trained professionals in the field
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Disability ….is Natural
We have no doubt society will one
day appreciate this, but we
intend to make it happen sooner
rather than later.
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Guiding Principles
• Lives Self-Directed with whatever supports are necessary.
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Guiding Principles
• We all need families…
A Natural Support04/13/2023
Guiding Principles
• We and our families are the most important stakeholders
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Guiding Principles
• Families should receive the supports they need so that their family member can remain at home.
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Guiding Principles
• Supports designed to help recognize true abilities and achieve potential.
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Guiding Principles
• Services should be designed to support integrated lives within the community.
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System Barriers
• Investment• Bureaucracy• “They-ism”• “Us-ism”
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System Barriers• Investment
• Essential services require significant investment.
• Payoff outweighs the financial cost.
• Bureaucracy• Transparent• Flexible • Supportive• Innovative• Straight-forward• Collaborative
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System Barriers
“Us vs. Them”
• ‘Us-ism’• Must learn not to be ashamed of who we
are and of our appearance, communication, or behaviors.
• ‘They-ism’• Through public education, society will
recognize the valued roles of people with disabilities and realize there is much more that connects us than separates us.
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MA21 Policy Foundations Individuals and families must be
involved in: ● Planning ● Development ● Implementation of supports
Supports are: ● Flexible ● Individual/family friendly ● Easy to access ● Culturally sensitive ● MultilingualChapter 171 - Passed in July 2002An Act providing support to individuals with disabilities and their families.
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MA21 Policy Foundations
System is transparent • Access to amount allocated and
actual cost
Funding is personalized, not “cookie cutter”• Ability to shop around for supports
and/or providers
Real Lives Bill H4063 - An Act Relative to Real Liveshttps://malegislature.gov/Bills/188/House/H4063
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MA21 Policy Foundations Substantial consultation with us over changes in
regulations and policies.
Chapter 171 - Passed in July 2002An Act providing support to individuals with disabilities and their families.
Supports and education are maximized, rules and regulations minimized.
System promotes and supports innovation and creativity
System is free of “Us-ism” and “They-ism,” both for working collaboratively with us and our families and by valuing our roles in society.
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Policy Recommendations
• Enhance supports for individuals and families through agencies and advocacy organizations.
• Properly fund and implement in-home, in-school and in-community supports for children.
• Establish a comprehensive policy that makes school inclusion central to the culture of public education.
• Develop and support a comprehensive transition policy beginning promptly at age 14.
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Policy Recommendations
• Streamline the waiver system to eliminate unnecessary bureaucracy, demonstrate trust in families, and save money.
• Develop a comprehensive policy for monitoring, measuring, and safeguarding inclusion and self-direction, taking full advantage of community supports.
• Ensure that long-term supports are available throughout the lifecycle.
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John Anton
Supporting the “Real Lives” Bill HB151
“Nothing About Us Without Us”04/13/2023
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“Real Lives”• H4063: An Act Relative to Real Lives
The Real Lives Bill is about options.
The Real Lives Bill is cost effective.
The Real Lives Bill empowers people to make decisions to how they live their lives.
The Real Lives Bill increases consumer satisfaction and reduces unmet need.
The Real Lives Bill is a “win-win” situation.
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“Legislative Advocacy is my
passion”J. Anton
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Speaker of the House, Robert A. DeLeo and John Anton
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“A Place to Call Home”
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“The ‘Real Lives’ Bill is an example of what a difference we can all make in our future.”
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Strategies
1. Bring other groups into the fold to solicit endorsement of this document and garner participation to go forward.
● Disability-specific groups ● Disability providers ● Department of Developmental
Services ● Other state agencies
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Strategies
2. Build on existing outreach and educational programs with successful records to train and develop leaders.
● MDDC/MASS Self-Advocacy Leadership Series ● MFOFC’s Family Leadership Series ● The Arc’s training series and educational conferences ● Continuing education ● Parent group programs
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Strategies
3. Take full advantage of marketing/media strategies
● Success stories● Demonstrate needs● Increase community supports and
services
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Strategies
4. Ensure that schools have necessary tools to fully and effectively practice inclusion and transition planning
● Need for accountability and consistency● Take full advantage of outside expertise and local family
organizing efforts ● Transition assessments
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Strategies
5. Develop short-term priorities, in consultation with advocacy groups and provider organizations that reflect 21st Century goals to:
● Target legislative and administrative changes● Fund objectives that are consistent with
these policies
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IN APPRECIATION• This project is funded by a grant from the
Massachusetts Developmental Disabilities Council, U. S. Department of Health and Human Services, Administration on Developmental Disabilities. Federal Award No. 93.630
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LET’S WORK TOGETHER TO
EFFECT CHANGE
IN ALL OF OUR LIVESTo arrange for a workshop presentation, please contact MFOFC at mfofc@mfofc.org or call 508-824.6946
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