• bring together stake holders from the different disability groups throughout Georgia to work together:  i.e.,  intellectual disabilities and other developmental disabilities; physical disabilities and spinal cord/brain injuries; and the disabled who need in-home support to avoid unnecessary institutionalization

• create a “partnership”  between these individuals, their families, and their advocates with providers, governmental leaders and agencies, and legislators to address Georgia's challenges,

• provide a focus, with consistent and successful strategies which can be used throughout the state,

• bring media attention and public awareness to the critical needs of individuals and their families, without which there will continue to be little priority and little funding.

How Many People Are Waiting?

As of November, 2009, the Division of Developmental Disabilities reports the following numbers of people IN the community waiting for home and community based services. The Short Term list reflects the number of individuals who need services in a short time frame (90 days to 6 months), and the Long Term list reflects individuals who need comprehensive or residential services to meet their long term needs.

Short Term List as of January, 2010: 2912
Long Term List as of January, 2010: 1839
Total Planning List, January 2010: 4603

Difference from October, 2009 List: The planning list numbers reported for October were significantly higher. See below.

Short Term List as of October, 2009: 3983
Long Term List as of October, 2009: 2326
Total Planning List, October, 2009: 6309

According to Division of DD staff, the significant decrease in the numbers of individuals waiting for services is due to Regional Office Staff scouring the lists for duplication of individuals and attrition. For example, if a family put their son or daughter on the short term list prior to graduation from high school for immediate support services such as supported employment or personal support, and also put them on the long term list in anticipation of needing residential services in the future, then their name appears on each list and is duplicative. The individual's name is left on the list that more accurately reflects their immediate need, and removed from the other list. In addition, in scrutinizing the lists, Regional Staff removed names of individuals they could not locate after numerous attempts. Their files remain open at the Regional Offices, but their names are removed from the planning list count.

However, we want to express caution at interpreting this information. We know based on national statistics and the population size and demographic characteristics of Georgia that the waiting list numbers should be much higher than even the 6,000 reported in October. Currently, Georgia has about 12,000 individuals in services. Louisiana, for example, has over 30,000 people in services, and it is a much smaller state population-wise than Georgia. Georgia is the sixth fastest growing state in the country, and has one of the top ten fastest growing aging populations in the country. Both of these statistics point to many more people potentially needing services than have approached the state for assistance. We estimate that over 17,000 individuals with developmental disabilities live with caregivers over the age of 64. Every one of these individuals is vulnerable if their caregivers become disabled themselves, or pass away, making the need for community placement an emergency.

Independent Care Waiver Program

As of January, 2010, the waiting list for people with physical disabilities in the community needing home and community-based support through the ICWP waiver is 177. Just like with the population of individuals with developmental disabilities, we know this number is probably significantly underestimated. According to “The Price of Neglect,” in 2006, there were 9000 people under age 65 living in nursing facilities and 190,000 people living in the state who need some form of assistance with activities of daily living. For this population, family and friends comprise the “formal” support for individuals who need this daily assistance – often at great sacrifice to their own economic status.

Community Care Service Program

The waiting list for this program is described as Medicaid and Non-Medicaid. The waiting list for Medicaid-funded services was significantly decreased after the legislature, in response to federal CMS policy changes, instituted estate recovery. For individuals who utilize Medicaid services and then pass away, Medicaid has the right to recover some of the costs of care that the Medicaid-eligible person received. For this reason, many seniors dropped off the Medicaid home and community-based services list, and went on the non-Medicaid waiting list. The non-Medicaid list is funded entirely with state dollars. As of November, 2009, the waiting list for these two types of funding is as follows:

Medicaid waiting list: 1925
Non-Medicaid waiting list: 21,195
 

What Does This Mean?

Three conclusions could de drawn from these statistics.

• The need for home and community-based supports for individuals with disabilities and those who are aging is greater than we know and than what is officially documented.

• In order to build community capacity, we need a strategic, multi-year program and funding plan to develop the home and community-based infrastructure that will cross disability populations, and enable people to age in place with personal supports, accessible housing and transportation, specialized equipment and services, AND there needs to be adequate reimbursement for services provided.

• In order to fund the services and supports mentioned above, the state needs more revenue. There are a variety of suggestions being floated from supporting a Tax Expenditures Report bill (SB 206) that catalogues tax credits and exemptions and weighs them against their proposed benefit, to raising the cigarette tax, to aggressive tax collections, etc. The sixth fastest growing state needs fuel!
 

For more detailed information about the Unlock the Waiting Lists! Campaign, please click here.

Unlock Stories

Click here to see our new Unlock Video (56K)

Click here to see our new Unlock Video (DSL)

There are over 6,700 families with their own stories. We talked to seven of them and collected the following stories. Feel free to download them and give one to your legislators with a hand written thank you note. As I read them, I am reminded why this campaign is so important. Thank you to each of these families for being willing to tell their own story.

Unlock Fact Sheets

The latest Unlock the Waiting Lists! Fact Sheet and other information of interest.

Summary of the Governor's Proposed 2011 Budget

Waiver Fact Sheets

The latest Waiver Fact Sheet and other information of interest.

Georgia Home and Community Based Waivers