A Desire for Independence

Living Independently is an article series by the Georgia Council on Developmental Disabilities (GCDD). The series will cover self-determination and self-direction.

Jenny Pryor lives an active life working in a Kroger supermarket, hiking on her off days or sometimes catching a movie. Her developmental disability hasn’t hindered Jenny’s desire for independence or her ability to live on her own, her mother Carol Pryor said.

Jenny receives services to support her needs through an option in a Medicaid waiver program called participant direction. The services empower Jenny to live a vibrant life, Carol said.

Jenny has been employed in the Kroger bakery for 12 years.

“As Jenny grew up and matured her needs became different,” Carol said. “In her early 30s, she said she wanted to live in her own home. We transferred from (traditional) services to participant direction. It was a good change for Jenny. It matched where she was in her maturation.”

A 2019 National Inventory of Self-Direction Programs identified over 260 self-direction programs in the United States with over 1.2 million individuals self-directing. In Georgia, there are four programs.

The Georgia Department of Behavioral  Health and Developmental Disabilities (DBHDD) facilitates funding for traditional and participant-directed methods of services through the New Options and Comprehensive Supports Waiver program of Medicaid, known as the NOW/COMP Waivers.

Jenny receives her services through the NOW/COMP Waivers.

The waivers are federally funded through Medicaid and the state for services carried out in the home or the community for people with intellectual or developmental disabilities.

The New Options Waiver is for people who can live independently and would also benefit from support. The Comprehensive Supports Waiver is for people who need a great deal of support at home and out in the community.

Participant direction is a delivery option for services in which Jenny and Carol, who is her advocate and representative, hired a staff of workers and vendor companies to provide the support Jenny needs. The mother and daughter choose the services, manage the budget, and decide on pay and hours.

Carol said, “Jenny’s participant direction services include supportive employment in which her staff person is a liaison on her behalf as work needs arise at Kroger. She’s been employed in the Kroger bakery department for 12 years.”

Utilizing the community access individual service, a person accompanies Jenny to outings and activities that she enjoys. If she wants to go on a hike or to a water park, she and the staff person plan the event. Through community living skills she learns about cooking, grocery shopping, budgeting and more.

In all, there are 23 services provided through participant direction.

With the traditional delivery of services, the recipient or their representative select a company that manages services and the budget provided. The company hires caregivers, support staff, and decides on the pay rate and schedule hours.

“When I was with a traditional service, I felt like it would only go so far, and when I switched over to participant (directed services), I felt like I could grow,” Jenny said. “You kind of feel like you can spread your own wings.”

According to Parent to Parent (P2P) of Georgia, 13,000 individuals received services from the NOW/COMP Waivers in 2019, and about 2,400 of that number received services through participant direction.

P2P is a nonprofit organization that supports healthcare needs of families with children including training on participant-directed services. Carol said Jenny experienced a shift after she started receiving services through participant direction.

“She started to see her decisions really were her decisions,” Carol said. “It empowered her. It wasn’t that she didn’t have that with (traditional) services, but the landscape was different. (Participant direction) was set up to have options. It just seemed later she realized ‘I can do this’ when her needs were changing.” SHE STARTED TO SEE HER DECISIONS REALLY WERE HER DECISIONS. IT EMPOWERED HER.

Karen Addams, vice president of Innovation at P2P of Georgia, adds that with the benefit of choices in participant-directed services comes a lot of responsibility in having to train staff and organize the schedule of needs for their services.

“The person managing the services can be the individual or a representative, but most often it’s a parent,” Addams said.

A financial support services provider, also called a fiscal agent, is required for participant-directed services. “They handle the payroll and make sure everything is done according to the law,” she added.

She managed participant-directed services for her late daughter after using traditional services.

“We had a company that provided everything she needed,” Addams continued. “One of the problems … (was) if I wanted someone on Saturday, maybe they would send ‘Jane’ one weekend or ‘Sally’ the next. They are filling the slot, but maybe not with someone well-fit for a family.”

Melvin Smith, chair of the Georgia Participant-Direction Advisory Group, said his son receives adult speech therapy, language therapy and adult dental among other services in the participant direction delivery system, as well as services through traditional delivery.

Members in the advisory group are all volunteers who advocate for participants and representatives using participant-directed services and advise the state on issues. The group meets with state officials once per quarter. “We’re boots on the ground,” Melvin said.

About three years ago, the advisory group was able to make a difference with the grouping of a few services, he explained.

Physical therapy, in addition to speech and occupational therapies, were offered together with a total of $1,800 in Medicaid funding available annually for the services. The advisory group explained to representatives from the state that in some cases only one of those services might be needed by a person and the cost could be greater than $1,800.

“Now each (of those services) stand alone and the amount of funding for each has increased up to $5,400 annually,” Melvin said. “We had an integral part in making the state aware of the issue.”

For more information on services, download the Participant Direction Handbook here. The book was created by the Georgia Council on Developmental Disabilities and P2P of Georgia.

What is Self-Direction?

What is Self-Direction? Self-direction is a model of long-term care service delivery that helps people of all ages, with all types of disabilities, maintain their independence at home. When a person self-directs, they decide how, when and from whom their services and supports will be delivered. As a model, self-direction prioritizes participant choice, control and flexibility.

Self-direction is a model of long-term care service delivery that helps people of all ages, with all types of disabilities, maintain their independence at home. When a person self-directs, they decide how, when and from whom their services and supports will be delivered. As a model, self-direction prioritizes participant choice, control and flexibility.

Self-Direction Programs in Georgia

SELF-DIRECTION PROGRAMS IN GEORGIA Comprehensive Supports Waiver (COMP) Georgia Community Care Services Program (CCSP) Medicaid Waiver Independent Care Waiver New Options Waiver (NOW)

  • Comprehensive Supports Waiver (COMP)
  • Populations served: Individuals with intellectual/developmental disabilities (birth to no maximum age)
  • Self-directing participant count: 2,800 across Comprehensive Supports Waiver and New Options Waiver
  • Georgia Community Care Services Program (CCSP) Medicaid Waiver
  • Populations served: Individuals with disabilities (aged 0 – 64) and seniors
  • Self-directing participant count: 436
  • Independent Care Waiver
  • Populations served: Adults with severe physical disabilities including traumatic brain injuries (aged 21 – 64)
  • Self-directing participant count: 150
  • New Options Waiver (NOW)
  • Populations served: Children and adults with intellectual/developmental disabilities
  • Self-directing participant count: 2,800 across Comprehensive Supports Waiver and New Options Waiver

Source: Applied Self Direction