Public Policy for the People: Making a Difference Magazine Winter 2020

A Tribute to Dawn Alford

2020 Legislative Preview – Getting Ready to Advocate

by Alyssa Lee, PsyD, GCDD Public Policy Research & Development Director

Starting on Monday, January 13, 2020, the Georgia General Assembly will begin its race towards the finish line. The Georgia Constitution only grants the assembly 40 days to complete all its work. While the days do not have to be continuous, the assembly’s traditional deadline of late March or early April does not allow for much dawdling. 

With that in mind, it is never too early to double check who your elected officials are at Open States. Make sure to enter your entire home address, as multiple elected officials can represent the same ZIP code. You can also confirm their contact details and committee assignments at the official Georgia General Assembly website.

Remember, your elected officials cannot represent your opinions if you have never taken the time to educate them on issues of importance to you. Whether you have new folks or old folks, be sure to take some time to re-introduce yourself. Your elected officials work for you, so put them to work for your interests! A government of the people and for the people only works if the people raise their voice. We at the Georgia Council on Developmental Disabilities (GCDD) are counting on you to do just that.

For a quick recap on how a bill becomes a law in Georgia, be sure to check out Georgia Public Broadcasting’s short video on the legislative process.

2020 Session Theme: Budget, Budget, Budget

As the Georgia General Assembly’s only required task, the passage of our state’s balanced budget is always a highlight of each year’s session. However, this year is sure to be one for the books as Governor Kemp, in early August, directed state agencies to propose massively impactful, 6 percent cuts to their fiscal year 2021 budget. To put that into perspective, the Georgia Department of Behavioral Health and Developmental Disabilities (DBHDD) alone was tasked with finding areas to cut, totaling approximately $56 million. Agencies submitted proposals in September, which provided us all with a preview of what to monitor during the upcoming session.

Although many of the cuts come from state agencies’ administrative and operational budgets, there are service areas that will likely be impacted. For example, DBHDD has proposed cutting approximately $1 million from each of the following developmental disability service areas: Marcus Autism Center, family support services and assistive technology and research.

Also impacted by the governor’s directive will be DBHDD’s yearly proposal for new Medicaid NOW/COMP waiver slots. Typically, DBHDD requests additional funds for approximately 125 new waivers each year. In addition, they request funds to annualize approximately 250 waivers from the previous fiscal year. For the upcoming fiscal year, DBHDD only requested to annualize 125 waivers, and they are not requesting funds for any new NOW/COMP waivers. Given the waitlist of over 6,000 people in Georgia for NOW/COMP waivers, GCDD is very concerned by this change.

Finally, although GCDD receives primarily federal funding to continue the great work being done around the state, GCDD does receive state funding for our fantastic IPSE programs. GCDD is particularly concerned that the 6 percent budget cut will mean that IPSE funding is scheduled for a $50,000 cut for fiscal year 2021!

It is important to note that the changes are only proposed changes as of now, and cuts could be reorganized as the session progresses. Due to the possibility of additional cuts to services we care about, GCDD will be relying on your strong advocacy skills throughout session. Following Governor Kemp’s State of the State address in mid-January, the Governor’s Office of Planning & Budget will officially release Kemp’s budget recommendations. While ultimately the House of Representatives and the Senate decide what is included in the budget, the governor’s recommendations usually serve as guiding light. Be on the lookout for many updates on the budget, including what you can do about the proposed changes. We will also be including budget updates in our public policy calls and newsletter.

GCDD’s 2020 Public Policy Direction: Disability in ALL Policy!

The Georgia Council on Developmental Disabilities is governed by a 27-member board, appointed by the governor and comprised of at least 60 percent individuals with developmental disabilities and family members. Other members include policymakers that represent various agencies and organizations having a vested interested in persons with developmental disabilities.

Each year, the council comes together in the fall to formulate a legislative agenda to bring about social and policy changes that promote opportunities for persons with developmental disabilities and their families to live, learn, work, play and worship in Georgia communities. This year our council approved changes to our public policy department, which will allow GCDD to engage with legislators to ensure people with developmental disabilities are considered in ALL policy. Our 2020 legislative priorities are as follows:

HEALTH AND WELLNESS

We are committed to advancing sound policies that improve the overall health (physical, mental, emotional and sexual) of people with developmental disabilities and their loved ones. The following topics will be highlighted in our health and wellness policy initiative:

We will always include eliminating the waiting list for NOW and COMP waivers in our policy initiatives until the waitlist in Georgia is ZERO. These waivers allow individuals with developmental disabilities who qualify for an institutional level of care to receive the supports they need to live healthy lives in the community. As of August 2019, 6,048 Georgians with developmental disabilities were on the waiting list for a NOW or COMP waiver. Our advocacy around this very important issue remains as crucial as ever.

  • The Shortage of DSPs: Workforce Crisis
    We believe that a competent, well-trained and caring workforce of direct support professionals (DSPs) is essential to the health and wellbeing of individuals with disabilities who utilize home and community-based services. We support strategies to address this crisis so people with disabilities can have the care they need.
  • Gracie’s Law (Organ Transplant Discrimination)

We support the Nobles family and Representative Williams in their efforts to ensure that people with developmental disabilities are not denied an organ transplant simply because of their disability status.

EDUCATION

Inclusive education policies, starting with early childcare settings and continuing through postsecondary education, are necessary to assist Georgians with developmental disabilities in reaching their full potential. Currently, our education focus includes:

  • IPSE Programs

We believe that all students, regardless of ability, should have access to postsecondary education programs in the state of Georgia. Inclusive postsecondary education (IPSE) programs provide students with intellectual and developmental disabilities access to education not otherwise available. Currently there are nine IPSE programs in Georgia serving approximately 139 students. They are Kennesaw State University’s Academy for Inclusive Learning and Social Growth, University of Georgia’s Destination Dawgs, Georgia Institute of Technology’s EXCEL, Georgia State University’s IDEAL, Columbus State University’s GOALS, East Georgia State College’s CHOICE, Georgia Southern’s Eagle Academy, Albany Technical College’s LEAP and the University of West Georgia’s Project WOLVES.
 

GCDD is committed to the growth and support of IPSE programs because we recognize their value in preparing students to live increasingly independent lives within their communities.

GCDD works to address the targeted disparity of African American and other minority students who are disproportionately identified in special education. They often end up in the Georgia Network for Educational and Therapeutic Support (GNETS) system or expelled from school, which leads to a higher probability of incarceration. We support policy initiatives aimed at reducing the number of students being placed in the school-to-prison pipeline and look forward to the recommendations of the Senate Study Committee on Educational Development of African American Children in Georgia.

EMPLOYMENT

GCDD supports Georgia’s vision for a public system that funds employment supports first. We will work to advance policies that improve competitive, integrated employment options for Georgians with developmental disabilities. Some policy proposals include:

  • Phasing out 14(c) certificates that currently allow people with disabilities to be paid subminimum wage
  • Increasing the budgets of DBHDD and the Georgia Vocational Rehabilitation Agency (GVRA) to assist the organizations in increasing the hourly rate of Georgia’s supported employment services
  • Reallocating funds from day habilitation program rates, which continue to be well above the national average, to supported employment rates, which continue to be well below the national average

TRANSPORTATION

Reliable transportation options are critical to ensure people with developmental disabilities are truly included in all aspects of their communities. GCDD supports policies that improve current transportation options, including House Bill 511 (HB 511), which aims to create a state agency focused on transit. HB 511 also includes a committee whose purpose is to ensure vulnerable populations, including people with low income, people with disabilities and people who are aging, have access to appropriate transit options. We believe this legislation will improve transportation for people with disabilities, particularly in the rural parts of our state.

HOUSING

GCDD supports policy solutions that provide the infrastructure and funding necessary to address the shortage of accessible, affordable housing options for people with developmental disabilities.

BUDGET

We believe Georgia’s budget highlights our state’s priorities, and GCDD strives to educate lawmakers on the importance on maintaining/increasing budget line items that impact Georgians with developmental disabilities. As described in our budget highlight, we believe it will be critical during 2020’s session to be vigilant of any changes to budget line items that might impact the supports and services on which people with developmental disabilities and their families rely. We will strive to keep each one of you updated on changes, and we know that you all will be ready to advocate when the time comes!

Frequently Asked Questions:

Q   How do I find out when legislative committees are meeting?

A   You can find the schedule for the House of Representative online at the State House calendar portal and the schedule for the Senate at the Senate calendar portal. If you plan to attend a committee meeting in person, plan to be flexible, as meeting times often change suddenly. Additionally, you can often watch committee meetings online. View State House meetings here. View State Senate meetings here.

Q   How do I find the status of a bill?

A   If you know the bill number, you can track it by visiting the official Georgia General Assembly website. Or you can read GCDD’s Public Policy for the People e-newsletter and participate in our public policy calls.

Q   How can I help my school-aged child learn about the legislative process?

A   Consider signing them up to be a page. Pages deliver messages to the senators and representatives when they are meeting in the legislative chambers. It is such an important job that there is even a Georgia law, O.C.G.A. §20-2-692, that states “children who serve as pages of the General Assembly during the school year, either at regular or special sessions, shall be credited as present by the school in which enrolled in the same manner as an educational field trip, and such participation as a page shall not be counted as an absence, either excused or unexcused.” To learn more about becoming a page, visit the Senate page program site and the House page program site.

How to get involved

Quick Facts:

  • Governor: Brian Kemp (Republican)
  • Lieutenant Governor: Geoff Duncan (Republican)
  • Secretary of State: Brad Raffensperger (Republican)
  • 56 State Senators: (35 Republicans / 21 Democrats)
  • 180 State House: (106 Republicans / 74 Democrats)

GCDD Advocacy Days Logo 2019F2020 Advocacy Days are Here!

Join the Georgia Council on Developmental Disabilities (GCDD) at the Georgia State Capitol in downtown Atlanta during the 2020 legislative session to learn about policies affecting people with disabilities, and join advocates from across the state in speaking with elected officials about these very important issues.

Each day will focus on a different topic that affects Georgians with disabilities.

January 29 – Gracie’s Law (Organ Transplant Discrimination)

Gracie’s Law, written to avoid any organ transplant discrimination against people with disabilities in Georgia, will be introduced to the Georgia legislature in January 2020. While the Americans with Disabilities Act (ADA) denies discrimination based on any disability, there is still a lack of federal enforcement. (Read more about Gracie’s Law on pages 12-13.)

February 6 – Inclusive Post-Secondary Education (IPSE)

Inclusive college programs across the state offer students with intellectual and developmental disabilities (I/DD) a variety of experiences and opportunities for growth as they prepare for the next chapter of their lives. With IPSE, students with I/DD can now realize their dream of continuing their studies in a university or college setting with their peers.

February 19 – Home & Community-Based Services      

GCDD will always include eliminating the waiting list for NOW and COMP waivers in our policy initiatives until the waitlist in Georgia is ZERO. These waivers allow individuals with developmental disabilities who qualify for an institutional level of care to receive the supports they need to live healthy lives in the community. As of August 2019, 6,048 Georgians with developmental disabilities were on the waiting list for a NOW or COMP waiver. Our advocacy around this very important issue remains as crucial as ever given the proposed state budget cuts and the ZERO waiver slots recommended by DBHDD for Fiscal Year 2021.

February 27 – School-to-Prison Pipeline (SToPP)*

With advocates, GCDD will educate and inform lawmakers to develop and implement a plan to reduce the number of African American males in special education classes who are at risk of being pushed out of school and into the criminal justice system.

The school-to-prison pipeline is the funneling of children from the public schools into the juvenile and criminal justice systems, in part, due to zero-tolerance school discipline policies, disproportionate application of student suspen-sions, high-stakes testing and administrative practices that adversely affect children of color, poor children and children with learning disabilities. (Read more on pages 18-19.)

March 11 – Employment*      

GCDD will work to advance policies that improve competitive, integrated employment options for Georgians with developmental disabilities. These include: prohibiting certificates that currently allow people with disabilities to be paid subminimum wage; increasing the hourly rate of Georgia’s supported employment services; and reallocating funds from day programs rates to supported employment rates, which continue to be well below the national average.

What to Expect Each Advocacy Day

Each day kicks off at 8 AM at the Central Presbyterian Church, across from the Gold Dome (201 Washington St SW, Atlanta, GA 30334), where leaders from GCDD and other organizations will train and teach advocates how to approach legislators, make a connection and discuss the topics that are important to you. After the interactive training, advocates and leaders will head over to the Gold Dome to meet with legislators. Event ends at 12:30 PM.

Agenda

8:00 AM – Check- In & Breakfast

9:00 AM – Welcome Remarks & Training

10:00 AM – Leave for Capitol

10:30 AM – 12:30 PM – Meet Legislators at the Capitol

Registration

All registrants should register on Eventbrite to attend the Advocacy Days of their choice. Organizations and agencies should complete the group registration option.

All registrants need to provide their home address so the GCDD public policy team can identify your district and legislators.

Frequently Asked Questions (FAQs):

From what to bring and where to park, GCDD has you covered. Check out the FAQs, and be prepared for a full day of advocacy.

Become an Advocacy Team Lead

Geared at preparing advocates to take a leadership role at the annual advocacy event, team lead volunteers will learn how to navigate the Georgia State Capitol and support attendees in speaking with their legislators. Team leads will earn $100 per each Advocacy Day for which they volunteer. Each individual must complete one training and fulfill all the responsibilities as determined by GCDD’s public policy team.

Sign up to be a Team Lead.

MARK YOUR CALENDARS AND JOIN US!

Meet Charlie Miller, GCDD’s New Legislative Advocacy Director

As the legislative advocacy director, Charlie Miller leads the Georgia Council on Developmental Disabilities (GCDD) in its community engagement and advocacy efforts in the state legislature. He also works alongside Georgians with disabilities and other stakeholders to build coalitions around issues important to the disability community.

Charlie brings over 10 years of advocacy experience to the team. He joins GCDD from the Georgia Vocational Rehabilitation Agency, where he most recently served as the legislative liaison. Charlie began honing his skills in advocacy as a student at the Academy for Inclusive Learning and Social Growth at Kennesaw State University (KSU). While attending KSU, he served as an intern in the public relations and community engagement departments. In this role, Charlie collaborated with nervous students and their parents on navigating campus life, managing program expectations and more.

After completing his program at KSU, Charlie continued developing his expertise in leadership through community engagement. For example, he has enjoyed sitting on the boards for such organizations as the Statewide Independent Living Council and the Cobb County Transit System Advisory Board. Charlie is also a member of ADAPT, a national grassroots community that organizes disability rights activists to engage in nonviolent direct action; the Association of University Centers on Disabilities (AUCD), a network of interdisciplinary centers advancing policy and practice for and with individuals with developmental and other disabilities, their families and communities; and TASH, an international leader in disability advocacy whose membership is comprised of a community committed to positive and lasting change in the lives of people with significant disabilities.

To further engage with his community, Charlie is currently enrolled in a graduate-level program at Georgia State University (GSU). As part of GSU’s Leadership Education in Neurodevelopmental Disabilities (GaLEND) program, he helps shape the futures of emerging leaders in the disability community.

“I’m thrilled to continue my work in advocacy at GCDD,” said Charlie. “Being able to advocate for the many issues that affect the disability community – whether it’s access to reliable transportation, inclusion in education or access to healthcare – is something I’m very passionate about.”

Charlie lives in Decatur with his fiancé and two cats, Harper and Hugo. A Georgia native, he is the proud son of Butch and Teresa Miller and brother to Cole and Carey. When he’s not in the office or at the Capitol, Charlie enjoys staying active by participating in marathons and obstacle-course races.

 

The Fight for Gracie’s Law

by Jennifer Bosk

GracieAs far as gender reveals go, this was a simple one. No cupcakes with pink or blue centers, no boxes of helium-filled balloons. Erin and David Nobles had agreed to a genetic test, suggested because of her late-age pregnancy, but mostly because she knew it would be an easy way to find out if she was expecting a boy or girl.

Erin eagerly answered the doctor’s office phone call about the test results only to hear an expressionless voice say, “It’s a girl. She has Down syndrome.” “There was no joy in the nurse’s voice, it was flat, no hint of celebration,” recalls Erin.

The Nobles promptly changed doctors, finding one who celebrated the impending birth of their baby, Gracie Joy. At 24 weeks into the pregnancy, the Nobles were told the baby had an atrioventricular (AV) canal defect – a large hole in the center of her heart. Approximately 45% of children born with Down syndrome have some form of a congenital heart defect.

Born on March 9, 2019, Gracie Joy spent 17 days in the neonatal intensive care unit (NICU). A few weeks later it was time to have her heart surgery, and she entered the pediatric intensive care unit (PICU) at Children’s Hospital of Georgia (CHOG). In total, Gracie Joy stayed at CHOG for eight weeks working to gain weight and fighting a bout of pneumonia, which delayed her heart surgery.

Eventually Gracie Joy had a successful surgery and was finally able to go home.

While spending a quiet evening at home, David and Erin were relaxing – watching TV, scrolling through their phones while their kids slept. Erin was reading more about Down syndrome and disabilities in general. Something caught Erin’s eye, and she turned to David and read him information that shocked them both – people with disabilities do not receive equal consideration for organ transplants. “Do you realize if Gracie Joy needed an organ transplant, we would have had to fight to get her on a list?” said Erin.

“I was blown away! How is that even possible?” said David. “I didn’t want to talk or even think about it. It’s something we could easily have been faced with.” At that moment, the Nobles realized this was an opportunity to do something for their daughter and for all people with disabilities in Georgia.

Gracie’s Law, written to avoid any organ transplant discrimination against people with disabilities in Georgia, will be introduced to the Georgia legislature in January 2020 by Representative Rick Williams (R – Milledgeville, District 145) and Senator Burt Jones (R – District 25). While the Americans with Disabilities Act (ADA) denies discrimination based on any disability, there is still a lack of federal enforcement.

“Even with federal protections in place, children and adults with disabilities continue to face an unfounded amount of discrimination by the medical community,” said Rep. Williams. “For far too long, people with disabilities have been denied organ transplants based on misconceptions about their quality of life, which consequently impacts their health care. This legislation seeks to change that stigma and ultimately save lives.”

Currently, only 12 states have laws in place to stop organ transplant discrimination: California, New Jersey, Maryland, Massachusetts, Oregon, Delaware, Kansas, Ohio, Pennsylvania, Washington, Louisiana and Indiana.

“It’s a very important issue, and it’s very emotional,” said Rep. Williams. “This is good legislation. It’s nonpartisan, and everyone is on board. Legislators have been coming up to me saying they are ready to sign it.” Erin explains it is important to have a state law so that if there is an issue, it can be fought at the state level.

She paints the picture of someone with a very sick child with a disability having to find a lawyer to represent them at the federal level, filing with a federal court, waiting to get on the federal docket – all overwhelming, time consuming and expensive. “If you have a child with disabilities, get your boxing gloves on – you need to fight,” Erin said.

The Nobles also point out it is not simply the organ transplant center that is doing the denying. Many times, doctors treating patients with disabilities don’t even make a referral to a transplant center. Parents are told to take their child home and spend the remaining time with them. “We’re dealing with old mindsets, doctors assuming that children with disabilities are not eligible for organ transplants. That’s our biggest issue,” said David.

Gracie’s Law was written and submitted to the Georgia legislature quite rapidly. After the Nobles’ talk that Friday night about organ transplants for people with disabilities being denied, Erin reached out the following morning to Tami and Wayne Pearl in Louisiana who had already submitted their own request for a law to their state legislature called Evie’s Law, named for their daughter with Down syndrome. Wayne immediately sent his five-page bill for the Nobles to review and gave them advice on selecting the right member of the Georgia General Assembly to sponsor the bill, suggesting the Nobles find a legislator who aligned with their morals and beliefs.

Discussing their Georgia legislators, David, who works at the Georgia Department of Community Supervision in Milledgeville, recalled meeting Rep. Williams at several town meetings. “I knew the kind of person he is. He was definitely someone I could align with; my beliefs fit his beliefs.”

Rick reached out to Rep. Williams. “I went through my spiel, and he told me [to] send him what I had, and [he’d] be in touch.” Ten minutes later Rep. Williams called Rick to tell him that Gracie’s Law had been sent to the legislative council, and the following day Sen. Jones said he would submit the bill on the Senate side.

Looking back, David said, “When we got that phone call from the doctor’s office about Gracie having Down syndrome, it was like a funeral. We couldn’t even decorate the nursery. But that was a year ago, and we’ve made it through. Now we are introducing legislation to make a difference in our community and our state. Who would have thought this is where we would be?”

The Georgia Council on Developmental Disabilities will be advocating for Gracie’s Law alongside the Nobles family during its 2020 Advocacy Days. To learn more, visit www.gcdd.org

To read more in Making a Difference magazine, see below:

Download the pdf version of the Winter 2020 issue.

Download the large print version of the Winter 2020 issue.

Tags: Advocacy, Making a Difference, public policy, voting, georgia politics

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