NOEWAIT National Organization to End the Wait through Advocacy, Information and Transformation We Can. We Will. We Must. END the Wait - Together

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NOEWAITNational Organization to End the Wait
through Advocacy, Information and
TransformationWe Can. We Will. We Must.END
the Wait - Together
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• Currently, more than 300,000 children and adults
  who have developmental disabilities -- such as
• Autism,
• Down Syndrome,
• Cerebral Palsy or
• Mental Retardation
• are on waiting lists in nearly every state across
  the country for long-term health care services
  and supports

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FAMILIES HELD PRISONER BY WAITLISTS
In most states, children and adults will wait
more than ten years before receiving assistance
and care.  Once they receive services individuals
with Developmental Disabilities and their
families can not move from one state to another
without starting all over in the lengthy waitlist
in the new state. This means those experiencing
job transfers and others who need to move are
locked into remaining in the state where funding
is available.
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WAITLISTS ARE LONG

• Colorado - 12,000
• Texas 100,000
• Florida 16,000
• Pennsylvania 21,475
• Georgia 5,900
• Maryland 17,250
• These wait lists translate into YEARS of waiting.

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WHO ARE SOME OF THESE FOLKS ON THE WAITLIST?

• Dale 51, has profound mental retardation and
  epilepsy, wait list since 2003
• Due to inappropriate services, removes toenails,
  fingernails and fillings in his teeth.
• Needs assistance with his medication, supervision
  and training

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WHO ARE SOME OF THESE FOLKS ON THE WAITLIST?

• Beverly is 25, has behavior issues, sleeping
  problems, seizures and moderate retardation
• Lives with parents who no longer know how to
  assist her
• Needs an outside placement as soon as possible.
  Waitlist for four years

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WHO ARE SOME OF THESE FOLKS ON THE WAITLIST?

• Ben is 8 years old, Down Syndrome and Autism
• Needs critical medical services and therapy using
  the Childrens Extensive Services Waiver
• Insurance capping therapy, durable medical
  equipment supplies and total coverage. Parents
  have no money left.
• Waitlist is 3-5 years

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NOEWAIT IS FORMED
A growing coalition of advocates, parents, and
community leaders have joined forces to form
NOEWAIT . . .
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NOEWAIT IS . . .
Dedicated to ending waitlists for services for
individuals with Developmental Disabilities
through ADVOCACY within the political system
and with families, the sharing of
INFORMATION from all sources, and the
TRANSFORMATION of the laws.
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OUR DREAM . . .
A seamless process by which Dale, Beverly and
Ben can be provided appropriate services so
desperately needed in a timely and seamless
fashion, and can take those services with them no
matter where they live.
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NOEWAIT ACTIVITIES

• Organizational Development Capacity-Building
• Establish NOEWAIT as the recognized national
  leader in addressing the concerns of people and
  their families who are on wait lists.

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2. Grass-Roots Coalition Building Increase and
activate membership Organize 2 people from each
state Develop an Advisory board that will
include people and families, as well as
top leaders, researchers and thinkers.
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• 3. Policy Research, Review
• Development
• Identify best-practices, develop our position
  statements
• Learn from states that have successfully
  addressed the problem

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4. Public Relations Communications
Activities Establish and disseminate our
message to all stakeholders through all forms of
media.
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• 5. Stakeholder Education
• Develop and implement methods to educate
  legislators, affected families, organizations,
  and others through public forums, etc.
• Conduct a national symposium or conference

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6. Fundraising Raise individual, grant, and
sponsor donations to fund our efforts.
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• 7. Public Policy Action
• Deliver our proposed policies to legislators and
  government departments with policy
  decision-making authority.
• Persuade 2-3 State Governors to lead discussion
  of issue with Federal government
• Work with the National Council of State
  Legislators.

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• 7. Public Policy Action (cont.)
• Persuade 5-6 US Congressmen Representatives
  Senators to lead draft of new legislation
• Get the Center for Medicaid and Medicare Services
  to do a feasibility study to transform the system
  from a current state Medicaid system that has an
  entitlement to ICFM level of care to a to new
  federal program that focuses on community and
  family.

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8. Wait List Data Collection for every state To
completely identify the scope of the waitlist
problem nationwide Collect data from membership
in the know Identify missing regional data
and contact states for information
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NOEWAIT IS A LISTSERV . . .
NOEWAIT is a listserv open to all parents,
friends, individuals with disabilities,
professionals, politicians, governmental
employees and others.
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THE MISSION OF NOEWAIT
BECAUSE Across the nation, people with
intellectual and developmental disabilities wait
years for services and supports and can not move
freely from state to state or community to
community. . .
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THE MISSION OF NOEWAIT
BECAUSE There must be adequate funding for
lifetime services and supports needed by our most
vulnerable family members, without gaps or
delays.
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THE MISSION OF NOEWAIT
BECAUSE Funding must be available in all
states, portable across and within states and
promote self-determination for the individual
with the disability, their families and legal
guardians . . .
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THE MISSION OF NOEWAIT
WE PLEDGE To unite the efforts of families,
providers, government agencies, advocacy groups
and citizens to change laws and policies across
the country and eliminate waiting lists for
people with intellectual and developmental
disabilities . . .
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HOW DO I JOIN THE NOEWAIT LISTSERV?

• Email noewait_at_noewait.net
• or visit the NOEWAIT website at
  http//www.noewait.net
• Or send a note to
• NOEWAIT
• PO Box 411
• Parker, CO 80134

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THE MISSION OF NOEWAIT
We can. We will. We must. End the wait . . . 
TOGETHER
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A FINAL THOUGHT
"If I am not for myself, who will be? And if I
am only for myself, what am I? If not you, who?
And if not now, when? Rabbi Hillel, quoted by
Samuel Adams and others