Advocating for a Better Georgia
The Georgia Council on Developmental Disabilities (GCDD) set out across the State to listen to what changes people with disabilities, their families, caregivers and other advocates wanted to see over the next five years in regards to disability services and supports. As a part of its mission to bring about social and policy changes that promote opportunities for persons with developmental disabilities and their families, GCDD kicked off its strategic Five-Year Plan by hosting public forums and gathering input through an online community survey.
In accordance with the Developmental Disabilities Assistance and Bill of Rights Act of 2000, GCDD – and all national developmental disability councils – is required to develop and implement a Five-Year State Plan that identifies the most pressing needs of people with developmental disabilities in the State.
The plan, based on extensive community input, focuses on several areas of significance, including employment, education and early intervention services, housing, transportation, self-determination and advocacy, health, recreation, community-based services and supports, and other activities.
Public Forums and Surveys
GCDD hosted 11 forums across Georgia during the months of August and September to gather public input. Over 225 self-advocates with developmental disabilities, family members and friends representing over 63 communities shared their thoughts and concerns regarding the services and supports available to them.
GCDD engaged various local communities on topics of interest by conducting two-hour public forums in the following cities: Dalton, Gainesville, Stockbridge, Macon, Albany, Columbus, Atlanta, Athens, Savannah, Augusta and Atlanta (Spanish).
Attendees were asked three questions, which sparked in-depth conversations of what the next five years should look like for Georgians with developmental disabilities.
1. What are the things in your community that allow people to fully participate in school, in the community and in life? What is working well in your community?
2. What is not working well in your community? Are there things missing that are needed for people to be able to fully participate in school, community and in life? What are the barriers to full participation?
3. What are your ideas or suggestions about how we/your community could have more of what is needed for people to be able to fully participate in school, community and life? How could barriers to services and/or supports be reduced or ideally resolved?
As a part of its community outreach, GCDD also collected input via an online survey that asked 11 questions pertaining to access to childcare, respite care, self-advocacy and integrated activities in the community for people with developmental disabilities.
Over 400 online surveys were received from community members identifying the needs and gaps in services available to people with developmental disabilities. Over 40% of survey participants identified themselves as family members; over 30% as professionals in the developmental disability field; approximately 13% as people with disabilities; and over 10% as advocates. The questions, both at the public forums and on the survey, revealed commonly held views on certain issues, while some emerged as region-specific barriers with possible solutions.
What Matters Most
When addressing barriers, 10 out of the 11 public forums and the online community survey highlighted lack of employment opportunities and accessible and affordable housing as impediments to full participation. Attendees stressed the need for vocational training, the need to do away with subminimum wages or even helping employers understand the benefit of hiring people with disabilities to make competitive employment a reality.
Overwhelmingly, 57% of those who participated in the survey identified improving transition from school to work or living in integrated communities as the issue most important to enhancing the quality of life for people with developmental disabilities in the next five years. When it came to housing, people noted the lack of affordable and accessible housing, and they wanted to have a choice of living independently in their own place with or without a roommate. In the online community survey, about 33% of respondents said Georgia needs to work on renting or owning affordable housing, but also having the money to support people who have their own place.
Advocating on behalf of her brother who has a developmental disability, Kelly Parry, a student from Georgia State University, noted the importance of housing.
“Housing is really the issue for me and my family,” said Parry at the Sept. 30th public forum in Atlanta. “My brother is never going to be able to own his own home or have a job, so our options are limited.There is also a balancing act between caregivers and us as a family who do not have the energy to do what caregivers can.”
A number of forum participants expressed a strong need for self-advocacy and advocacy learning opportunities. Echoing Parry’s sentiments, the community noted a lack of coaching for self-advocates and the need for parents to know that they had the power to be agents of change.
“My parents would never make it to these [public forums] and it makes me think that there is a pretty hidden part of the population that doesn’t get advocacy or has a hard time having their voices heard,” Parry added.
GCDD Executive Director Eric Jacobson agreed. “That is an excellent point when it comes to advocacy. [Kelly’s] parents not being able to attend a public forum like this one speaks to the population whose voices go unheard and we have to address that as we start building the next Five-Year Plan.”
Additionally, issues such as the lack of funding to support self-advocacy groups resonated at the public forum in Albany, GA.
Other barriers also came up as topics of concern throughout the State.
Residents in Augusta, GA said that lack of transportation limits people with disabilities to work or manage a social life, and that Medicaid doesn’t always pay for transportation. This problem was also an area of concern for people with disabilities and their families, especially when crossing county borders.
Other issues also included a need for doctors to receive more training to work with people with disabilities; respite care for families and more.
GCDD also hosted a Spanish public forum in Atlanta to better understand the needs that affect communities who may have cultural and language barriers when navigating the service system. Many noted that dual language in schools or webinars and resources where the schools are helping parents with children with disabilities are working in local communities. The lack of adult services or social workers that speak Spanish created barriers towards full inclusion.
The lack of waivers has been an ongoing advocacy issue for GCDD and the UNLOCK (formerly known as “Unlock the Waiting Lists! Campaign”) during Georgia’s legislative session. With a waiting list that barely moves, advocating for more waivers and more pay for caregivers are major concerns for the disability community.
“There are now over 8,000 people on the developmental disability waiting list and over 3,000 people whom the State has determined need services within six months,” Talley Wells, director of the Atlanta Legal Aid Society Disability Integration Project, said at the Atlanta public forum.
Besides the length of the waiting list, community members touched on the process being too complex and the inequity around waiver eligibility. Like many things that affect services and supports, it all comes down to funding.
“We might try and provide grants to local communities to address issues, but often we have to use local issues as a illustration of what is taking place across the State,” said Jacobson.
Solutions
While barriers were noted, GCDD asked both public forum and survey participants what ideas could help improve inclusion in the community. Many suggestions centered on employment, schooling, transportation and housing options. When addressing transportation, ideas like partnering with car services such as Uber or other ride-sharing programs were discussed.
Advocates also felt that employment could be enhanced with transition coaches and helping students with disabilities get a diploma as opposed to a certificate so they can pursue higher education. Expanding Project Search, which is already in 18 locations in Georgia, will also address the transition from high school to employment issue.
Groups suggested faith-based organizations or other community groups get involved to raise awareness and build more inclusion and advocacy. Community members in Athens, GA also recommended more Partners in Policymaking classes to support the need for advocacy and training to improve efforts to affect a strong policy agenda.
Partners in Policymaking is a national program designed to teach people with disabilities and family members the power of advocacy to positively change the way people with disabilities are supported, viewed, taught, live and work.
To address communication and healthcare barriers that many people with disabilities and their families face, there were calls to create resources for healthcare providers, to train medical students to work with people with disabilities and to offer technical support for parents and caregivers.
The Next Steps
The public forums and community surveys were just the beginning of the process to create GCDD’s Five-Year Plan for Georgia’s developmental disability community.
GCDD members and staff reviewed the public forum comments and the survey results and will be discussing goals, objectives and strategies at the January council meeting. Then, a draft plan will be developed and reviewed in April, which will be submitted for public comment. After additional feedback, the plan will be submitted to the Administration on Intellectual and Developmental Disabilities (AIDD) for approval. The Five-Year Plan (2017-2021) will take effect October 1, 2016.
“The big takeaway from the public forums is that while we have made progress over the last few years, there still remains a huge need for transportation, that people want to go to work, and that people do not have very many options when it comes to determining who will provide services and supports,” said Jacobson. “GCDD will try and address these issues along with the support of agencies such as Department of Behavioral Health and Developmental Disabilities, Georgia Vocational Rehabilitation Agency, Georgia Department of Education and State Legislators.”
Charts in Document:
Source: 2015 GCDD E-Survey, 409 participants, September 2015
Public Forums in Georgia
Questions revealed commonly held views on certain issues, while some emerged as region-specific barriers with possible solutions.
• Ten out of the 11 forums cited lack of employment opportunities and accessible and affordable housing as barriers to full participation.
• Albany: More access to technology
• Dalton: More medical staff who understand developmental disabilities
• Macon: More training for self-advocates and parents
• Savannah: More inclusion for younger children
• Stockbridge: Help for people who don’t know where to find resources
What is your gender?
Male: 17%
Female: 82%
Transgender: 1%
What category best describes you?
Family Member: 43%
Professional: 33%
Person with a Disability: 13%
Advocate: 11%
What is your race?
White: 67.5%
Black: 26%
Two or More Races: 3%
Asian: 2%
Hispanic or Latino: 1%
American Indian: .5%
Native American: 0%
What age is your child?
1-22: 51%
23-45: 39%
46-64: 8%
65+: 2%
What issues are most important to improve?
• Improving transition from school to work or meaningful integrated community activities: 56.8%
• Eliminating waiting lists for services: 53.5%
• Increasing paid employment in the community: 52.3%
• Improving family supports including respite care: 45.2%
• Supporting people to participate in meaningful integrated community activities during the day: 40.0%
What is GCDD doing now that is most helpful?
• Providing people with information about what is happening in Georgia and across the country: 57%
• Helping bring people with and without disabilities together in their communities: 55%
• Helping students with disabilities get jobs: 54%
• Hosting Disability Day at the State Capitol: 50%
• Helping self-advocates to be leaders in their lives and communities so they can speak up: 47%
• Including students in post-secondary education: 37%
• Offering scholarships so individuals and families can attend conferences: 29%
• Including children in their schools and clubs: 27%
Creating GCDD’s New Five-Year Plan
Start
• Aug/Sep 2015: Gather Community Input, Public Forums & Online Survey
• Nov 2015: Review Community input
• Jan 2016: Discuss Strategies & Goals
• April 2016: Develop Draft Plan
• May 2016: Public Comment on Plan
• June 2016: Submit Final Plan to AIDD
• Oct 2016: New Plan takes Effect
End
Read more from the winter 2016 edition of Making a Difference here:
