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

2. 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

3. 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. FAMILIES HELD PRISONER BY WAITLISTS

4. 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.

5. 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

6. 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

7. 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 Children’s Extensive Services Waiver Insurance capping therapy, durable medical equipment supplies and total coverage. Parents have no money left. Waitlist is 3-5 years

8. A growing coalition of advocates, parents, and community leaders have joined forces to form NOEWAIT... NOEWAIT IS FORMED

9. 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. NOEWAIT IS...

10. 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. OUR DREAM...

11. 1. 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. NOEWAIT ACTIVITIES

12. 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.

13. 3. Policy Research, Review & Development Identify best-practices, develop our position statements Learn from states that have successfully addressed the problem

14. 4. Public Relations & Communications Activities Establish and disseminate our message to all stakeholders through all forms of media.

15. 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

16. 6. Fundraising Raise individual, grant, and sponsor donations to fund our efforts.

17. 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.

18. 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.

19. 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

20. NOEWAIT is a listserv open to all parents, friends, individuals with disabilities, professionals, politicians, governmental employees and others. NOEWAIT IS A LISTSERV...

21. 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... THE MISSION OF NOEWAIT

22. BECAUSE There must be adequate funding for lifetime services and supports needed by our most vulnerable family members, without gaps or delays. THE MISSION OF NOEWAIT

23. 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... THE MISSION OF NOEWAIT

24. 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... THE MISSION OF NOEWAIT

25. Email noewait@noewait.net or visit the NOEWAIT website at: http://www.noewait.net Or send a note to NOEWAIT PO Box 411 Parker, CO 80134 HOW DO I JOIN THE NOEWAIT LISTSERV?

26. We can. We will. We must. End the wait... TOGETHER THE MISSION OF NOEWAIT

27. "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 A FINAL THOUGHT