The Massachusetts Alliance for 21st Century Disability Policy (MA21) was formed with the mission of advancing full community participation for individuals with disabilities. MA21 is a partnership between several advocacy organizations that aims to create a consensus policy framework to improve public policies for people with disabilities and their families. The document outlines guiding principles for disability policy, such as individuals directing their own supports and families receiving necessary assistance. It also identifies barriers like bureaucracy and recommends strategies like enhancing family supports and ensuring inclusive education.

1. ~~ Real Lives ~~
Human Aspirations
Common to All Americans
Massachusetts Families Organizing for Change

2. 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.

3. 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…

4. 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

5. 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

6. “Disability Is Natural”
A happy family is but an earlier heaven.
-- John Bowring

7. “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 education
o Medical care
o Social activities
o Employment opportunities
o Transportation options

8. 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

9. Disability ….
is Natural
We have no doubt society will one day
appreciate this, but we intend to make
it happen sooner rather than later.

12. Guiding Principles
• Lives Self-Directed with whatever
supports are necessary.

13. Guiding Principles
• We all need families…
A Natural Support

14. Guiding Principles
• We and our families are the most
important stakeholders

15. Guiding Principles
• Families should receive the supports
they need so that their family member
can remain at home.

16. Guiding Principles
• Supports designed to help recognize true
abilities and achieve potential.

17. Guiding Principles
• Services should be designed to
support integrated lives within
the community.

18. System Barriers
• Investment
• Bureaucracy
• “They-ism”
• “Us-ism”

19. System Barriers
• Investment
• Essential services require significant
investment.
• Payoff outweighs the financial cost.
• Bureaucracy
• Transparent
• Flexible
• Supportive
• Innovative
• Straight-forward
• Collaborative

20. 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.

21. 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
● Multilingual
Chapter 171 - Passed in July 2002
An Act providing support to individuals with disabilities and their families.

22. 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
HB151 - An Act Relative to Real Lives

23. MA21 Policy Foundations
 Substantial consultation with us over changes in regulations and
policies.
Chapter 171 - Passed in July 2002
An 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.

24. 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.

25. 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.

26. John Anton
Supporting the
“Real Lives” Bill HB151
“Nothing About Us Without Us”

28. “Real Lives”
• HB151: 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.

29. “Legislative
Advocacy is my
passion”
J. Anton

30. Speaker of the House, Robert A. DeLeo and John Anton

31. “A Place to Call
Home”

32. “The ‘Real Lives’ Bill is an example of what a
difference we can all make in our future.”

33. 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

34. 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

35. Strategies
3. Take full advantage of marketing/media
strategies
● Success stories
● Demonstrate needs
● Increase community supports and services

36. 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

37. 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

38. 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

39. LET’S WORK TOGETHER TO
EFFECT CHANGE
IN ALL OF OUR LIVES