Lack of respite care, no structured programming strain families already in distress
UPDATE 3:10 p.m. 4/6: See companion story on CSB, Works’ followup call
If you are the parent or guardian of a special-needs adult, you already know that your support options are limited in Clayton County. Last night, parents of special-needs adults and their advocates confronted the Board of Commissioners, demanding support for their families’ needs.
“Show me a daycare that accepts a 20-year-old non-verbal child. There are none.“
Letter to BOC from the mother of a special-needs adult
In particular, they are asking for extended respite care for much-needed vacations and to address their own health issues.
Ellen Divins, a single mother who lives in Jonesboro and makes her living sewing and customizing logo wear, supplementing her income by selling crafts at the Jonesboro Farmers Market, brought her son Buddy, who is 20.
“Officer Buddy” is a bit of a celebrity in Jonesboro, where the Jonesboro Police Department named him a community ambassador and issued him a uniform. During the school year, he attends high school. But summer vacation leaves him and his mom in limbo. Divins says she needs a knee replacement but has no one to look after Buddy’s particular needs for the weeks or months it will take her to recuperate.
“I came here tonight to ask for any kind of assistance with drop-in daycare, day center, day placement, after-school care for children that are not elementary-school-age special needs,” Divins told The Clayton Crescent. “My situation is, I am a sole parent of a special-needs child who is 20 years old, still has two more years in school, and I don’t have any help. I need medical care, but I don’t have any way to get it because I don’t have anybody that can or will watch my child. I also need to work, and I don’t have childcare. It’s unaffordable. You can’t drop in and say, ‘Hey, can you do this?'”
Divins said she doesn’t see much point in filling out Buddy’s Medicaid waiver paperwork, even though she’ll do it, because only a few hundred of those 7,000 waivers are processed each year. Medicaid waivers pay for disabled and elderly people to receive care at home or near home, which keeps them out of institutions, and allow caregivers to take “respite” breaks to recharge their own mental, physical, and emotional batteries.
Linda Mitchell came with her son, Kyle, 30, “because I’m fighting for these special needs kids. Parents need a break.” Mitchell sighed. “Parents don’t get a break. We need overnight stays, we need everything we can get, obviously. I don’t sleep at night because he has seizures. So, my body is worn out. I need my batteries recharged to where I can take a trip. Can’t take a trip. I’m. Worn. Out.”
“There needs to be something set up in Clayton County with qualified people,” Divins said. “There needs to be drop-in centers. There needs to be day activity centers–not where they’re just put in a room. There needs to be for the older special-needs population of Clayton County anything—programming, safe places, good people. Anything at all would be better than we have now.”
Mitchell told The Clayton Crescent, “Clayton Center has a house, but they keep telling me that they don’t have the funds to fix it up. They have funds to fix it up. They just don’t want to do it….They can’t get the employees to do respite. And they keep saying, ‘The air’s out,’ or ‘Something’s wrong with the house,’ or something, you know. It’s been empty. It’s been empty for three years. Clayton Center gives us diapers. They also give us wipes. They also have a budget. And when Peggy McIntyre was there—wonderful, Wonderful. Miss Peggy McIntyre, they got rid of…. She left about two years ago.”
“We need respite,” Mitchell said.
Chivonne Noel Fleming and Meia Ballinger addressed the board on the families’ behalf.
Fleming said she is the widowed mother of a special needs teenager and that her support “is almost nonexistent.”
“We would like to make a request for resources, assistance, daycare, respite services, and any other resources that may be available,” Fleming told commissioners. “Me, I have a 15-year-old son that is autistic on the spectrum. I’m a widow and first-generation American. So basically what that means for me is I do it alone. The majority of my family lives abroad. And then also as a widow, single mom, so my support is almost nonexistent. I’m lucky and blessed to have a job that allows me to bring my son to work when school is not in session, but outside of school, it’s very, very difficult. And so we need some resources, we need all the assistance that we can get. At this time, there are a few places that allow resources for us, but it’s very limited, and there’s been one thing after another, literally. So we’re here before you all today to request assistance of any sort. We’re in desperate need and it’s very difficult, and any assistance, again, that you can provide will be greatly appreciated, and thank you for your time.”
Ballinger read a letter from one parent that detailed their frustration at the lack of county support:
“Being a parent is hard. Being the parent of a special needs child is harder. Most folks would crumble under the pressure of nonstop medical issues, doctors’ appointments, school meetings, and testing. Every morning, I wake up wondering which fight I have to fight today. Lately, it has become a fight of no services available in Clayton County. Many of us, if not all of us, special needs parents in Clayton County, are financially near exhaustion, near or well under the federal poverty level. Certainly, there are programs like food stamps that we are grateful for, but there is no support here in Clayton County for special needs care after school, within the school district or otherwise. There are very expensive daycares, but show me a daycare that accepts a 20-year-old non-verbal child. There are none. Day centers, drop-in centers, care facilities: we need them. Programs for our students 18 and under, great. But my kid will be in school until his twenty-second birthday. There needs to be some collaboration with the school district and the county to provide this necessary care. Why do I have to choose to work and keep a roof over my head, or leave a vulnerable child alone while I work? This is not an option, so please, please, offer some solution. We are desperate for support that doesn’t involve a five-plus-year waiting list. The medical waiver program waiting lists are not a viable solution when we may be financially in trouble. Therefore, school goes back in August. I am trying to work and be a productive member of society, but if you have no friends that are willing and capable of taking care of your special needs child, what are the options? If I stay at home, I earn no pay, and bills do not get paid. If I go to work, I need competent care for my disabled son. We need answers. Our kids exist. Our kids and and their families deserve the support. Please help us not fall completely through the cracks. Thank you.”
Watch
“Listen, I appreciate y’all bringing this to our attention,” Chairman Jeff Turner said. “If y’all would get in touch with me, I will get in touch with Superintendent [Jessie Goree] and maybe all of us can sit down and, you know, talk through some things, and see what we can do.”
Who can help?
The county has an appointed board for Behavioral Health and Developmental Disabilities services. According to the county’s webpage for the board, “The DBHDD Region 3 Advisory Council shall engage in disability services planning within its region and may perform other functions as may be provided or authorized in law by the Department. The RAC is to assist DBHDD in improving services to individuals with mental illness, developmental disabilities, and addictive diseases within Region 3 by identifying gaps in services, considering strategies for addressing these service gaps, and participating in follow-up efforts to encourage service improvements.”
According to minutes of the March 17, 2022 DBHDD Region 3 meeting, “7,000 individuals across the state are on the Planning List for a Medicaid waiver. Staff shortages are a major problem because it is forcing the closing of homes for services. There will be a 5% increase for providers starting July 1, 2022.” The last published minutes on the site are from November 2022.
Members of the Clayton County Community Services Board are listed on the Clayton Center’s website. The board works with the state, interfacing with the state DBHDD to help bring services to Clayton County.
Khadija Works, who is board chair, said part of the problem with getting services for Clayton County is “politics.” Other counties have more seasoned CSBs, she said, who are able to walk into the state Capitol, “talk to senators, and get what they want. But for some reason, they don’t like Clayton County so much.” Also, because Clayton County is a “money-making county,” Works said, state officials were trying to merge Clayton with rural counties for services.
In other counties, she said, commissioners pay for facilities. “We don’t get that. We have to pay. We don’t even get state money. We have to do a reimbursement thing.”
Works said she and Clayton Center CEO Dr. Lee Adams work closely with members of the Clayton legislative delegation.
Asked Tuesday night whether she had contacted her state representative, Mitchell laughed.
“Every time we call that office, ‘We don’t know when we’re gonna open up. We don’t know what we’re gonna do.'”
Mitchell said she couldn’t remember who her state rep was, but that she had called the Clayton Center, “and they tell me they don’t know when they’re gonna have respite, they don’t know.” She also said she thought that the Clayton Center had spent funds that would have gone to respite care and repairs, but said she could not prove it and reiterated that that was just her opinion.
Works told The Clayton Crescent on Wednesday, “That’s not true….There’s no money that’s being [misspent].” She said she and Adams are scrupulous in their handling of funds and that, as board chair, “I see all of it.” She added that Adams had found an old account with momney in it that she said he was “afraid” to touch.
“We could have spent that money, but we didn’t,” she added.
As for whether the Clayton Center was unable to provide services, Works said that also was not the case: “Even during COVID, the Clayton Center never closed.”
Works said the parents are welcome to contact her anytime at (404) 790-6178—”My number is open”—and that she would connect them with any services she could.
“My thing is I hate to see people suffering,” she said.
The Clayton Crescent has asked Adams for more information about services available to these families and to respond to their concerns about adult daycare and respite support.
On Wednesday, Divins said she had gotten what she called a “genuine” e-mail response from Turner, saying he would put some people together to address the problem after the Easter holiday.
Meanwhile, parents are organizing informally amongst themselves, she said, and swapping contact information.
“I’ll talk to anybody,” Divins said.
The next meeting of the Georgia DBHDD board is scheduled for April 13 at 1 p.m. in Atlanta at 2 Peachtree Street in the 24th floor board room. You can sign up online to attend.
Parents also can fill out an online constituent services form or call Georgia DBHDD at (404) 657-5964 to make their needs known.
