National Organization to End the Waitlists

 We can, We will, We must end the wait - TOGETHER

NOEWAIT is a grass-roots, national, social justice movement organized to ensure full opportunity, choices, freedom, and self-determination for people with intellectual and developmental disabilities in every community by eliminating wait lists for services in every state.  This will be accomplished through public education, mobilizing people into action, and changing public policy.

SIGN THE PETITION TO END THE WAITLIST

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.

BECAUSE
There must be adequate funding for lifetime services and supports needed by our most vulnerable family

members, without gaps or delays.


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.

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.

                History

Until the 1960s, people with developmental disabilities received services in large institutions or their family provided care with little in the way of government support.  Class action law suits and intense scrutiny of the horrifying conditions in institutions led to public outcry and change.  The Community Mental Health Act of 1963 began the deinstitutionalization of people with developmental disabilities (and mental health issues).  Medicaid was created in 1965 to provide care for this population and others.  In 1972, Title XIX of Medicaid program added a new benefit called Intermediate Care Facilities (ICF/MR) Most ICFs are large congregate care facilities focused on intensive medical or behavioral intervention, and they are both public and privately operated.   The Americans With Disabilities Act of 1990 contained an 'integration mandate' that requires public agencies to provide services "in the most integrated setting appropriate to the needs of qualified individuals with disabilities."  In 1999, the Olmstead decision of the Supreme Court upheld the ADAs integration mandate when the state of Georgia appealed to enforce institutionalization. 

 

Approximately 4 million Americans have developmental disabilities.  These individuals attend school, usually until they are 21 years old.  At that point, they move into the adult services category and should receive services through "Home and Community-based Waivers."  Because Waivers are not an entitlement, in almost all states they are not fully funded to meet the need and involve variations in the types and intensity of services and supports that are offered.   This results in waitlists and lack of portability of services from one state to another and one county to another.  The time periods people can be left waiting for help obtaining job services, a community-based program, or a secure home in which to live can be anywhere from five to twenty years long, depending upon the state and the type of service needed. 

 

Tens of thousands of people are on waitlists for Waiver services.  Few families can afford to pay out-of-pocket for these services (an average of $35,000 - $75,000) per year for host or group home placements because parents have had to leave careers to care for their children and pay for large medical bills. 

 

The result of this lack of access to services is that people with developmental disabilities    sit at home with their parents with nothing to do and nowhere to go.  Most often one of their parents must leave their employment to stay at home to take care of them.  And as the parents age, older adults with disabilities especially those in the "baby boom" generation often have no one to care for them and the entire family is in crisis. We know many parents in their 70s and 80s needing care themselves who continue to care-give for their sons and daughters in very difficult situations.   There are many cases where parents have passed away, leaving their adult child without a place to live.  In cases where parents have found their adult children cannot be managed at home because of severe behavioral issues, or physical problems they, too, wait for disaster to strike.  When these families do not even have access to long-term care for their loved ones or choices for that care near their homes, the rights of these individuals are denied.  Families are even unable to move to other states or counties to accept better jobs, for example, because the price they may pay for doing so would be that their adult child will lose all of their services and go to the end of the line in their new state home.  Parents and sometimes siblings who have been left to care for these individuals are strained to their limits having to advocate daily in their communities, through their legislators and others just to obtain these basic human services. 

 

Essentially, we have regressed back to the 1960s, when parents and families had no support in taking care of their loved ones with developmental disabilities. 

NOEWAIT has developed a comprehensive plan for addressing the Wait List that includes the following activities:

 

Grass-roots coalition building

Purpose - Increase and activate membership

Policy research, review & development

Purpose - Identify best-practices, develop our position statements

Public Relations & Communications

Purpose Establish and disseminate our message to all stakeholders through all forms of media.

Stakeholder Education

Purpose -  Develop and implement methods to educate legislators, affected families, other organizations, and others through public forums, etc.

Fundraising

Purpose -  Raise individual, grant, and sponsor donations to fund our efforts.

Public Policy Action

Purpose -  Deliver our proposed policies to legislators and government departments with policy decision-making authority.

Wait List Data Collection for Every State

Purpose - To completely identify the scope of the waitlist problem nationwide

Reports on our progress in these key areas will be published on our website as we go along.

 

NOEWAIT communicates with our members via the Internet.  We welcome any person or organization who has an interest in being part of a national campaign to end wait lists to join us.

 

Contact Us:

noewait@noewait.net

 

WELCOME TO THE NOEWAIT DOCUMENTS PAGE

 

THE NOEWAIT PETITION TO END THE WAITLISTS, 11,000 SIGNATURES, SELECTED COMMENTS AND LETTER HAVE BEEN HAND-DELIVERED TO THE PRESIDENT, VP, AND SELECT CONGRESS PEOPLE.  NOW WE NEED TO FOLLOW UP BY SENDING IT TO ALL OTHER CONGRESSPEOPLE.

TO DO THIS, DOWNLOAD THE PETITION FILES AND MAIL THEM TO CONGRESSPEOPLE - THE DOWNLOADS ARE IN MSWORD FORMAT

Find your senators and congressperson

All the addresses of members of congress, by state, are here:

 

INFORMATIONAL VIDEO

 

VIDEO - "A HELPING HAND"

 

 

 To join NOEWAIT, email NOEWAIT@noewait.net

RETURN TO THE NOEWAIT MAIN MENU

SIGN THE PETITION TO END THE WAITLIST

 

.

.

.

.

.

.

.

 

xanga traffic
Tiger Direct Coupons