Unlock the Waiting lists!
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History of Unlock the Waiting Lists!

Inspired by a sense of solidarity found at a rally of a few hundred advocates at the Georgia Capitol in March of 1998, a few advocates decided to attend the “A Key of Our Own” conference training in New Orleans to hear about a growing national movement to shine light on the challenge of waiting lists for aging and disability supports. Some of the original delegates included Grace Covington-Fricks  (UAP, TFCC), Sarita Reddy  (UAP, Advocacy Alliance, Parent), Andrew Hales (Georgia Council on Aging), Catherine Stefanavage  (Advocacy Alliance, Parent), Mark Johnson (Shepherd, Independent Living networks)  Beth Tumlin, (Georgia ARC Network, People First, AA, Parent), and Carol Jones (Mark’s attendant/Shepherd volunteer). With your support, since then Unlock has focused its advocacy efforts primarily for people with physical and developmental disabilities. However, the goal of this Campaign continues to be to eliminate and/or reduce waiting lists in Georgia for all home and community-based services that support people with disabilities. Our goals include:

  • 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?

Developmental Disabilities Waivers- NOW/COMP


As of October 2010, 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 October, 2010: 3496
Long Term List as of October, 2010: 2221
Total Planning List October, 2010: 5717

The waiting list figures have fluctuated quite a bit in the past year. In April, 2010, the Division of Developmental Disabilities was reporting a total of about 4600 on the short term and long term lists combined previously. In October, 2009, they were reporting figures as high as 6300. According to the Division, the list reduction was due to removal of duplications and a concerted effort to verify the individuals who were still waiting for services. 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.

The Settlement Agreement for the USvGA case mandates 100 NOW/COMP waivers for individuals in the community who are waiting for services each year for the next 4 years. This will provide services for a fraction of the individuals needing these more substantial supports. The Unlock the Waiting Lists! campaign will continue to advocate for more Medicaid waiver services for individuals on the community waiting lists.

 

Independent Care Waiver Program - ICWP

Overview:
The Independent Care Waiver Program (ICWP) offers services that help a limited number of adult Medicaid recipients with physical disabilities live in their own homes or in the community instead of a hospital or nursing home. ICWP services also are available for persons with traumatic brain injuries (TBI). The program operates under a Home and Community Based Waiver (1915(c)) granted by the Centers for Medicare and Medicaid Services.
Eligibility Criteria

Independent Care is for eligible Medicaid recipients who have severe physical disabilities, are between the ages of 21 and 64 when they apply and meet the criteria below:

• Capable of directing their own services (individuals with a TBI do not have to meet this criteria)

• Have a severe physical impairment and/or TBI that substantially limits one or more activities of daily living and requires the assistance of another individual

• Medically stable but at risk of placement in a hospital or nursing facility because community-based support services are not available

• Are able to be safely placed in a home and community setting

Other factors also help determine whether eligible applicants can receive waiver services. Those factors may include: currently residing in a hospital or nursing facility, length of time on the waiting list, ability to live independently and the estimated cost of care (based on the projected care plan). People who are considering nursing home or other institutional care may be eligible for home and community-based services as an alternative through Georgia’s Medicaid waiver program. In order to qualify for the waiver programs, the individual must meet the criteria for Medicaid payment in an institution and certain other criteria as outlined above. The person is then offered the choice between community-based services or institutional care as long as the community services do not cost more than the institutional care.

How to Apply for ICWP
To apply for ICWP, contact the Georgia Health Partnership (GHP) at 678-527-3619 or 800-982-0411, ext. 3619. GHP will ask potential recipients questions over the phone, have them submit an application and schedule an in-person assessment. Based on the information provided, people may be eligible for ICWP and approved to receive services as funding becomes available.

Previous ICWP Figures:
1,177 served in 2009

Current ICWP Figures:
1,013 active as of September 13, 2010
165 waiting as of September 13, 2010

• The DCH proposed budget allows for only 135 people to receive funding for ICWP under Money Follows Person (MFP) slots from prior years.

Community Care Service Program - CCSP

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.

 

 

Medicaid Waiver Fact Sheets

The latest Waiver Fact Sheet and other information of interest.

 

Medicaid Long Term Care

Georgia Home and Community Based Waivers

ICWP Fact Sheet

Money Follows The Person Fact Sheet

NOW & COMP Fact Sheet

Source Fact Sheet

For More Information
Pat Nobbie, Deputy Director
Georgia Council on Developmental Disabilities
(888) 275-4233
unlockthewaitinglists@gcdd.org 

: GCDD :