According to a 2009 fact sheet from The Arc of U.S., there are approximately 5.4 million Americans (including children and adults) with developmental disabilities. Are you aware of how many people with developmental disabilities and their families are on “waitlists” for home and community-based services in the Medicaid program? There are over 300,000 in these queues that frequently involve countless years of waiting for community-based services across the country. Those individuals -- who are not spending their lives segregated in institutional settings -- 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."
Families struggle to do the best they can to earn a living while also caring for their children who often require extensive help with the activities of daily living that most people take for granted.
According to Rhonda Loving, a parent in Texas, “The nation has 300,000 individuals on a waitlist. Texas alone has over 100,000! This is why I volunteer for NOEWAIT. They deserve for their lives to be as productively as feasible. We should be allowed to receive the services that have been approved.”
In many situations, the parents are elderly and their adult child is middle-aged, sitting at home with their parents with nothing to do, losing important skills learned while in school, without the proper community and transitional supports to keep them developing and prepared for an independent life after their family dies. The challenges facing people on waitlists and their families are significant and highly stressful.
A parent in Florida said, “My non-verbal autistic daughter has been on a waitlist for 4 years now. We've spent our savings, have aged 10 years in five and need to outlive our daughter so that she is cared for. The only thing we can count on is our life insurance policies to help her when we die.”
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. This is especially difficult for military families who move from one military outfit to another as part of their duty to our country. 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.
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 gainful careers, even the military, to care for their children and pay for large medical bills.
NOEWAIT, National Organization to End the Waitlist, was founded Jan 19, 2008 by Denver Fox, Ed.D, a parent of a child with a developmental disability in Colorado who waited 10 years before receiving services. Fox says, “I am extremely concerned about the extensive waitlists for services and lack of portability of services from state-to-state for individuals with intellectual and developmental disabilities across the country, and the lack of a national effort to end those waitlists and gain portability.”
NOEWAIT is now a national drive, a grassroots organization of parents and advocates, including self advocates with disabilities, that has come together nationally to raise awareness about these huge problems. Over the past several months, NOEWAIT has been engaged in soliciting signatures for a petition calling on the President and Congress to solve these problems. More than 11,000 signatures have been captured so far, but more signatures are needed. Below is a link to NOEWAIT’s website which includes access to their online petition to sign and send to others.
Still, not every state and U.S. territory has NOEWAIT volunteers to help advocate for the end to waitlists. NOEWAIT currently has representation in Alabama, Arkansas, Arizona, California, Colorado, Connecticut, Florida, Georgia, Illinois, Indiana, Kentucky, Massachusetts, Maryland, Maine, Missouri, North Carolina, Nebraska, New Jersey, Oklahoma, Pennsylvania, Puerto Rico, South Carolina, Tennessee, Texas and Washington.
About half of our states and U.S. territories still need volunteer coordinators to take up the effort of sending out media alerts, recruiting more volunteers, getting signatures for the petition and mailing advocacy letters to representatives. If you are in one of the states or U.S. territories not already listed above, please consider volunteering. More than one volunteer for each state is welcome, too, but those states not yet represented definitely need an advocate to advocate for ending the waitlist.
As another parent in this effort said and many other families agree, “When my daughter grows up, I envision her living in a community-based setting – in a supported environment where she will have people who will make sure she gets her medications, has meaningful things to do, and where she is safe and living an adult life independent of me.”
For more information, or to get more involved in this advocacy effort to end the waitlist, contact NOEWAIT’s National Coordinator, Rhonda Loving at firstname.lastname@example.org.