DUNWOODY — A lot of toddlers fall and bump their heads.
So when Evan Woody took a tumble at one and a half years old, his parents, Lisa and Philip Woody, did not think much of it. Neither saw it happen nor could they spot a bruise.
But when Evan laid down for a nap, his mother said, she couldn't wake him back up.
Evan suffered from an epidural hematoma causing bleeding within the brain. The traumatic injury is often referred to by doctors as “talk and die" syndrome — where one minute a victim seems fine and the next they’re fighting for their life.
“In 24 hours, our life was totally upended,” Philip Woody said. "It's not really common — a lot of disabled Georgians are born with developmental disabilities or intellectual disabilities — ours happened within 24 hours.”
Evan, now 21 years old, is only a fraction of who he was, his parents say.
Those who know Evan describe him as a happy and compassionate person — who loves basketball, rushes to help when he sees a crying baby and is beloved by his elderly neighbors — but he can never live independently from his parents. A situation they say traps their child and them in an arduous schedule.
With one year left in high school, Evan’s parents are scrambling to plan support for him once he graduates.
The state of Georgia has been criticized for its treatment of intellectual and developmentally disabled residents including a lawsuit filed against it by the U.S. Department of Justice. Families struggling to care for disabled relatives say the system is nearly impossible to navigate and parents wait years — even decades — to receive help after their child ages out of high school.
After disabled students graduate, they and their families must rely on state-funded Medicaid waivers — the New Options and Comprehensive Support waivers — to pay for day care and other support programs. The system is managed by the state's Department of Behavioral Health and Developmental Disabilities which has been strapped for resources.
But the state only funds a handful of new waivers — if that — every year and as of July 23, there are more than 7,000 families on the waiting list to receive help.
The Woody family said they have been on the waiting list for more than a decade.
Anna Maki is the director of benefits navigation at the Bobby Dodd Institute — a nonprofit that helps individuals with disabilities integrate into society. Maki said a lack of care and isolation can cause individuals to regress so far that parents often find themselves back to square one of treatment.
“It's not an overstatement to say that services for this population is a life and death issue,” she said.
A Long History
Georgia has a long embattled history of inadequate services for disabled residents.
In the 1999 U.S. Supreme Court case Olmstead v. L.C., the court sided with two women who were continuously institutionalized in a state-run Georgia hospital despite doctors urging they be transitioned out. The court ruled the women had the right to be treated within their own community.
In 2010, the United States Department of Justice filed a lawsuit against the State of Georgia under the Americans with Disabilities Act and the Olmstead decision, after the department found in 2009, "Georgia was forcing people with disabilities into state hospitals instead of providing community-based services.”
The settlement required Georgia to move people with developmental disabilities from state hospitals and assisted living facilities into community-based programs determined by each individual’s specific needs.
The settlement terms were extended in 2016 after the Department of Justice alleged Georgia was not complying with all of the mandates which included up to 750 new Medicaid waivers to move people into the community and 400 waivers to prevent hospitalization during the course of five years.
According to DBHDD, Georgia has invested $256 million in meeting the terms of the settlement since 2011. In 2017, the department released a multiyear plan to improve efficiency of the program and optimize the number of families that could receive services.
Every year until specified otherwise, an independent reviewer releases a report documenting if the state is holding up its end of the deal. In the most recent report available from February, the reviewer concluded Georgia was making an effort but still has a long way to go.
"It is generally recognized that an additional investment of time and effort is required to complete the systemic reforms desired by the leadership of DBHDD, including those obligated under the terms of the Settlement Agreement and its Extension,” the report says.
The original Fiscal Year 2021 budget proposal from the governor’s office — released before the pandemic devastated the state's economy — maintained funding for 125 waivers that were appropriated into the Fiscal Year 2020 budget, but did not originally add funds for new waivers.
After the Woodys and other advocates lobbied for additional dollars, the final budget allocated funds for 100 new slots for NOW and COMP waivers, costing the state a little less than $5.6 million.
"At no time in the budget process was it ever proposed to cut waiver funding, and in fact, DBHDD requested funding for new waiver slots and received an increase of new 100 slots in the FY 2021 budget," DBHDD said in a statement.
But even with 100 new waivers yearly, experts say, it’s not enough to keep up with demand.
Eric Jacobson, executive director of the Georgia Council on Developmental Disabilities, said the state has never made disabled Georgians a priority. The council, funded mostly by federal dollars and some state dollars, is made up of a 27-person board appointed by the governor.
“At least in my 30 years, disability services is not considered a priority in our state as it is in most,” he said. "We can see that because of the amount of money that's put into providing funds and support for people.”
The governor's proposed FY2021 budget was the first time Jacobson could recall no new dollars being added to the waiver programs. Even after the last minute add back to the budget item, 100 new waivers is “a drop in the bucket” when you look at the number of families on the wait list, he said.
"There has to be a statement — it would come from the governor or the legislature — that they think the needs of people with developmental disabilities are a top priority for our state, and therefore they're going to address it using funding and human resources," he said.
Jacobson and families alike said they are not sure how families move up on the list.
"I think what generally happens — for no fault of anybody — is that the squeaky wheel ends up getting the services and support,” Jacobson said. "If a family is connected, if they complain enough, if they call all the time, then chances are they're going to be moved up that list.”
In a statement, DBHDD said that the list of families helps the department plan future waiver distribution and whether or not a family receives a waiver is prioritized by "life events and unmet needs."
"Some examples of life events that trigger eligibility for waiver services include: homelessness, death of primary caregiver, aging caregiver, and extensive behavioral support or medical need that the family cannot handle alone," the department said.
Maki “actively discourages” families caring for a disabled child or family member from relocating to Georgia. Evan should not have to face regression, she said, just because there is another individual with a higher level of need.
“The right thing to do would be to figure out how to meet both of their needs,” Maki said.
Since the pandemic shuttered schools and camps, Lisa and Philip Woody say Evan has regressed in his speech and other behaviors, giving them a small glimpse into what life may be like if he graduates from Dunwoody High School next year without a waiver funds.
After Georgia closed down, everyone was sitting at home — whether they have a disability or not, Philip Woody said. As things started to reopen, children without disabilities had increased opportunities to socialize.
“Evan can't ride a bike and he doesn't have any friends in the neighborhood,” Philip Woody said. “He was sitting on the couch in the rec room — watching his movies and hanging out on his iPad — all day.”
Unless his parents occupy his time with activities.
Lisa Woody, who works as an accountant, has worked many nights during the pandemic from 8 p.m. to 2 a.m. so she can help care for Evan during the day. Philip Woody has taken a leave of absence from work to plan what happens after Evan graduates — a small luxury that few families have.
On a hot Saturday in July, Philip Woody took Evan up the street to their church — the North Atlanta Church of Christ — to help members paint a rundown house on its grounds. The outing would not be possible if he hadn't halted his work.
The short activity, a small moment in one day, depicts what life is like caring for the 21-year-old. Philip Woody chased Evan around the area and tried to keep him preoccupied on painting.
But Evan liked the leaf blower and grass cutter more.
They must also make sure Evan doesn’t hurt himself, Philip Woody said.
Without a waiver, the Woodys face the challenge of paying a high price tag of day services for Evan. Day programs that provide the level of care he would need can cost between $15,000 and $20,000 a year, his dad said. If they ever have to move him into a living facility, that could cost up to $60,000 a year.
If Evan lives until 81, Philip Woody calculated, the total could be upwards of $2.8 million. The Woodys liken the cost to paying for a child to attend an Ivy League school for the rest of their life.
“Typically I tend to be a very positive person,” he said. “But now, with all of the challenges and looking to his future — especially after we pass away — how is he going to be taken care of? That's the biggest fear of any parent with a disabled child.”
‘Most in need’
When Evan was still in the Scottish Rite hospital after his injury, a social worker approached the Woodys and told them to start couple’s counseling before he was even discharged.
"We asked, ‘why we don't really have a problem?’” Lisa Woody said. “And they just replied: ‘you will.’”
Lisa and Philip Woody have been close to divorce a few times, they said, but were able to remain together with the support of their faith community.
The couple doesn’t take vacations. They’re up with Evan multiple times a night when he won’t sleep and have their shoulders tapped hundreds of times throughout the day.
“What I see is the families that stay together are incredibly strong,” Maki, with the Bobby Dodd Institute, said. “And that's a very small percentage. … Some people hit the wall where they just can't do it anymore.”
In their 60s, neither can plan on retiring if they want to give Evan a good life and receive no state support. The pair both have chronic health issues. Lisa Woody is currently taking oral chemotherapy for multiple precancerous conditions — which doctors said may not prevent cancer — and Philip Woody suffers from degenerative disc disease and arthritis. Both have been diagnosed with depression and anxiety.
Advocates say while parents try their best to give their disabled children a good quality of life, it slowly wears down their own.
In a small pink photo album, Lisa Woody keeps pictures of Evan before his accident. On one page, a baby beams up at the camera from inside a crib. The next, the same child in a hospital bed, hooked up to machines keeping him alive.
"What's going to happen to him after we die?” she asked. “That’s what keeps us up at night.”
On July 21, after a reassessment of their situation at the beginning of the month, DBHDD deemed Evan does not meet the criteria for assistance at this time.
The email points to recent recipients of the waiver who were prioritized for help — individuals who were incarcerated or homeless and a 92-year-old woman with no family support system.
“Unfortunately, we have extremely limited resources this year and are only able to provide new waiver funding to people with extremely high unmet needs,” an email to Philip from the statewide admissions manager reads. “... At this time, your son does not meet our most in need status.”
The decision has caused the family to consider moving out of state. Lisa Woody said through tears she feels like she is "on the edge of a nervous breakdown."
"Do I need to have one to get help?" she asked.
Editor's note: This story has been updated with a statement and more recent data from The Department of Behavioral Health and Developmental Disabilities that was not received in time for publication.