Saving Georgia’s Council on Developmental Disabilities

By Adina Solomon

For more than four decades, the Georgia Council on Developmental Disabilities (GCDD) has advocated for people with developmental disabilities and acted as a liaison between them and state leaders.

Today, the Council is made up of a 24-member board appointed by Governor Nathan Deal; and it represents about 158,000 Georgians with developmental disabilities in issues including education, employment and direct care.

“We are really in a unique space to be able to, without having any conflict of interest, really find out what people with disabilities and their families really need and want and are able to help give them a voice in a way that other organizations may not be able to do,” said Dawn Alford, Public Policy Director at GCDD.

But that mission could be under threat.

The History

The history of Developmental Disability (DD) Councils began in 1961, when a presidential panel found that state-run institutional facilities were often underfunded, and systemic abuse and neglect was a problem. In response to these findings, President John F. Kennedy proposed legislation to Congress that eventually became the Maternal and Child Health and Mental Retardation Planning Amendments of 1963.

The act was amended in 1970 as the Developmental Disabilities Services and Facilities Construction Amendments, which introduced the term “developmental disability” and created the state DD Councils. Georgia’s council began in 1971. Under the current DD Act of 2000, developmental disability is defined as a severe, chronic disability that is attributable to a mental or physical impairment, manifested before the age of 22, is likely to continue indefinitely and has functional limitations on life activities such as learning and mobility.

“DD Councils bring together the state government, individuals with disabilities, their families, professionals and foundations,” said Donna Meltzer, CEO of the National Association of Councils on Developmental Disabilities (NACDD) in Washington, DC.

“It’s really everybody coming together to say, ‘OK, let’s identify what our issue is, what is not working perhaps in our state or territory,’” she added.

New Concerns

In the current proposed federal budget by President Donald Trump, there are cuts to the US and its territories’ 55 DD Councils. Learning of this, councils began advocating for a fully funded budget in Fiscal Year 2019.

All DD Councils are funded by the Administration for Community Living (ACL), part of the US Department of Health and Human Services. State DD Councils received $73 million in the fiscal year 2017 budget. The president’s proposed budget calls for combining funding from three organizations: the State Council on DD, Part B Independent Living funding and Traumatic Brain Injury funding.

The single fund would be called the Partnerships for Innovation, Inclusion and Independence (P3I), and would receive $45 million in 2019. That is a 55.8% cut from the three organizations’ combined 2017 funding.

“To think that you can now combine three very different programs, ask them to address very real needs in states and territories, adhere to a high level of accountability and transparency, etc., and do that for $45 million is just not possible,” Meltzer said. “It means nobody will be served.”

Meltzer added that NACDD opposes the concept of P3I. She stressed that this proposal is in the President’s budget, not the official one from Congress.

Why Councils Matter

Nearly one in five people in the US has a disability. Of those 56 million Americans with a disability under the definition of the Americans with Disabilities Act (ADA), about five million people have developmental disabilities, Meltzer said.

“It’s very important that the Council is there and really focusing in on those needs, which I always fear could get lost if we’re only all about the bigger disability picture,” she added. “It’s really bringing that focus and attention to a very specific set of needs within the bigger disability population.”

Council members need to be representative of the state population and in all councils, 60% must either be people with developmental disabilities or their family members.

DD Councils exist so people with developmental disabilities can have full access to the community.

GCDD advocates at the Georgia General Assembly to make Medicaid support more home care. Medicaid is biased to providing institutional care, which comes at a higher cost to taxpayers and disrupts the lives of people who require care. Most people want to receive care at home so they can be part of the community and go to school or work, Alford said.

“Think about it. Would you want to live in an institutional setting?” she asked. “When I ask that to people, I’ve never met anyone who’s raised their hand to say, ‘Oh yes, I would love to go live in a nursing facility.’”

Under the current system, there is a waiting list for waivers to pay for home care. In Georgia, that list has almost 9,000 people with developmental disabilities. GCDD advocates for funding to reduce and eventually eliminate the waiting list.

“We don’t want people to have to wait for services,” Alford said.

Additionally, some of the biggest issues that councils address and advocate for are employment, education and healthcare, especially the future of Medicaid – a lifeline for people with disabilities.

A Council’s Impact

Each council has goals built into a five-year state plan. For GCDD’s 2017-2021 plan, the goals are education, employment, formal and informal supports, real communities and self-advocacy.

Initiatives stem from there. In 2010, GCDD launched the Real Communities Partnerships, which involves people with and without developmental disabilities in collaborative projects to support more communities inclusive of people with disabilities.

The Council supports Project SEARCH, a business-led, high school-to-work transition program that serves students with developmental disabilities. It happens at the workplace, and the goal for each student is year-round employment alongside coworkers. So far, GCDD has sponsored 29 Project SEARCH worksites.

The program has led to a 75% employment rate, $9.61 average wage per hour and 25 hours worked per week on average.

For its education goal, GCDD advocates for inclusive post-secondary education (IPSE) programs, which are dedicated to ensuring that every Georgia student has access to learning after high school, regardless of intellectual or developmental disability. The five-year plan wants to expand the programs to 15 universities and colleges by 2021.

GCDD has already supported the creation of programs at seven colleges and universities including University of Georgia, Georgia Tech and Georgia State University. Results are positive. Just 16% of adults with disabilities overall have employment, but those who graduated from IPSE programs have reached 40%.

GCDD also sponsors events, trainings and workshops around the State to grow workforce proficiency, supporting people with disabilities to live increasingly independent lives.

Supporting Georgia

GCDD’s success has been possible due to partnerships and relationships with key decision makers and Georgia policymakers. Not only has Governor Deal spoken at the GCDD-sponsored Disability Day events at the Georgia Capitol, but he has also supported many programs such as IPSE and the latest, Georgia STABLE program. In June, he launched Georgia STABLE, a tax-free savings program for eligible individuals with disabilities. The program is administered by the Georgia Achieving a Better Life Experience (ABLE) Program Corporation, which was established through the Georgia ABLE Act of 2016.

State Rep. Katie Dempsey (R-District 13) was a sponsor of the ABLE Act. It allows eligible people to save and invest up to $14,000 a year.

“I am grateful that Georgia’s DD Council serves as a voice for individuals with developmental disabilities and their families, representing approximately 158,000 Georgians with developmental disabilities,” Dempsey said in an email statement.

"Through public policy advocacy and successful programs, GCDD has helped countless Georgians with developmental disabilities thrive in their communities. All who call Georgia home should have the opportunity to live full and active lives, and GCDD helps every person living with developmental disabilities to set goals and reach their highest potential,” she added.

State Sen. Butch Miller (R-District 49) has supported efforts such as inclusive post-secondary education programs.

“Federal funding for developmental disabilities is close to my heart. Millions of families, including my own, are impacted by developmental disabilities. In 2014, Georgia was the only state with autism and developmental disabilities monitoring network sites,” Miller said in an email statement. “To reduce or eliminate research funding and care for children with developmental disabilities would be a shame and a disgrace. We are better than that.”

How Federal Cuts Would Affect Councils

Though DD Councils don’t provide direct services to people with disabilities, they advocate for issues that other organizations cannot, Alford said.

“That’s an important part of what we do. Not just connecting families and people with disabilities with their state leaders, but connecting other organizations together that are working on similar things,” she said. “I think of us a lot of times as kind of like that glue or link between different entities to put the whole picture together in a unique way that others might not be able to do.”

At the time of this writing both the US House and Senate have passed appropriations bills that would fund DD Councils at $73 million. This is level funding based on last year. Additionally, there was language in both House and Senate bills saying that Congress does not support the creation of the P3I.

Meltzer added, “To the best of my knowledge, based on phone calls with ACL/AIDD (Administration on Intellectual and Developmental Disabilities) leadership, ACL is no longer pursuing the P3I proposal as Congress and stakeholders in the disability community have communicated their opposition. We do not expect to see this proposal in the President’s FY 2019 budget which is expected to be sent to Congress in early February.”

Sen. Miller added that federal funding is paramount to carrying out GCDD’s work.

“GCDD requires and deserves proper funding to promote public policy that benefits those in need,” he said. “Families are often unable to care and support for their loved ones, but federal funding for organizations like GCDD provide hope, care and encouragement for these families. Research and education is critical and through federal funding, we will continue to provide meaningful care and support.”

How to Advocate for DD Councils

Individuals with developmental disabilities, their families and other stakeholders can advocate for DD councils. Here is how:

  • Learn more about what DD councils do and their many programs.
  • Once you’re educated, tell your friends and family about the work of DD councils.
  • Most importantly, educate and inform Georgia’s US Congress (Senate and House) delegation about what the DD Council does and how it has helped you or your family.
  • Advocate with Congress to pass a final appropriations bill that fully funds DD Councils at $73 million and keeps them within the DD Act and current structure because DD Councils work.

Impact of the GCDD Facts
GCDD Supported 7 IPSE (Inclusive post-secondary education) programs that provide students with intellectual disabilities an opportunity to attend these Georgia schools:

  • Kennesaw State University 
  • East Georgia State College
  • Columbus State University
  • Georgia Institute of Technology
  • Albany Technical College
  • Georgia State University
  • University of Georgia

IPSE Employment Rate Comparison: There is a 40% Employment Rate for Adults with Disabilities who graduated from IPSE programs vs 16% Employment Rate of Adults with Disabilities Overall.
GCDD Supported ASPIRE (Active Student Participation Inspires Real Engagement)Student led IEP meetings in schools mean students are more invested in their future and post-secondary outcomes like employment. Over 11,000 students and 4,000 teachers participated this past year across Georgia in this collaboration of GCDD and GA Dept of Education.

GCDD Sponsors Real Communities Partnerships
Real Communities Partnerships purposefully involve people with and without developmental disabilities in collaborative projects to support more inter-connected and self-sufficient communities inclusive of people with disabilities. Current GCDD community partnerships are:

  • Al Tamyoz Community Building/Basmet Ahmed – Clarkston
  • Centenary United Methodist Church (Macon Roving Listeners) – Macon
  • LaGrange Community – LaGrange
  • Forsyth Farmers’ Market – Savannah
  • Peacebuilders Camp at Koinonia Farms – Americus

GCDD Educated Georgians and Policymakers on the Benefits of Georgia STABLE Savings Accounts which allow people with disabilities tonow save and invest $14,000 per year since passage of the ABLE Act in Georgia, increasing their financial independence and economic self-sufficiency.

GCDD Sponsored 29 Project SEARCH Sites in GA: Project SEARCH is a business-led, high school-to-work transition program, serving students with developmental disabilities with the outcome of integrated employment.

Project SEARCH Gets Big Results:

  • 75% Employment Rate 
  • 25 Average Hours Worked Per Week
  • $9.61 Average Wage Per Hour

Approximate number of Georgians with developmental disabilities represented by GCDD is 158,000.

To read the entire magazine, see below:

Download pdf version of Making a Difference Spring 2017    Download Large Print Version of Making a Difference Summer 2017