~~ 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.

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…

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

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

“Disability Is Natural”

A happy family is but an earlier heaven.-- John Bowring

“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

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

Disability ….is Natural

We have no doubt society will one

day appreciate this, but we

intend to make it happen sooner

rather than later.

Guiding Principles

• Lives Self-Directed with whatever supports are necessary.

Guiding Principles

• We all need families…

A Natural Support

Guiding Principles

• We and our families are the most important stakeholders

Guiding Principles

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

Guiding Principles

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

Guiding Principles

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

System Barriers

• Investment• Bureaucracy• “They-ism”• “Us-ism”

System Barriers• Investment

• Essential services require significant investment.

• Payoff outweighs the financial cost.

• Bureaucracy• Transparent• Flexible • Supportive• Innovative• Straight-forward• Collaborative

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.

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.

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

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.

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.

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.

John Anton

Supporting the “Real Lives” Bill HB151

“Nothing About Us Without Us”

“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.

“Legislative Advocacy is my

passion”J. Anton

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

“A Place to Call Home”

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

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

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

Strategies

3. Take full advantage of marketing/media strategies

● Success stories● Demonstrate needs● Increase community supports and

services

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

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

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

LET’S WORK TOGETHER TO

EFFECT CHANGE

IN ALL OF OUR LIVES