Julie Kalambokidis and Suzan Reeve have been foster-adoptive parents as well as advocates for special needs children and families for most of their lives. So when these two Glenwood mothers ran into roadblocks, red tape and misinformation on care options for their special needs children and heard nightmare stories from other mothers navigating the same issues, they knew there was a problem.
So what did they do?
Kalambokidis and Reeve started their own company to cut through those roadblocks. They used their own training and experience as mothers first to provide respite and train others. They established a network of care givers. They filled a much needed gap between city and rural special needs care.
In a word, they started Embrace. The three-year old for-profit respite care company utilizes Reeve’s and Kalambokidis’ experience and education and a network of care givers to help families and their special needs children in rural southwest Iowa areas.
“Seeing our own need and talking to people about their struggles, we started talking to people and this just seemed like a natural thing,” Reeve said.
Reeve and Kalambokidis were backyard neighbors prior to forming Embrace. They both had a special needs child and was working for Pottawatomie County Mental Health while Reeve had adopted and fostered several children with special needs – and were having trouble finding adequate respite care.
“We would send our kids to respite, and they (respite providers) wouldn’t do what we asked or didn’t understand their needs or tried to treat them like regular children,” Reeve said. “So we were chatting one day and Julie said, ‘You know, we could do this on our own. We could coordinate the services to our liking.’ So I said, ‘Okay.’”
“I wasn’t really expecting an answer like that but we did it,” Kalambokidis said.
They opened their doors in the Fall of 2008 with a handful of clients. Today they have 10 employees and a network of nearly 30 respite care providers working with 40 clients as far north as Little Sioux, as far south as Hamburg and as far east as Lenox.
Kalambokidis is the executive director, Reeve the program director. Funding comes via the Iowa Medicaid Enterprise. A non-profit wing, called Embrace Iowa, a sub-chapter of the Iowa Federation of Families for Children’s Mental Health, raises money to target those needing services that are in the Medicaid-private pay funding gap. Parents can receive anywhere from 40 to 150 hours of respite care per month, depending on needs and how their funding is split.
The majority of Embrace’s clients receive Medicaid via a children’s mental health waiver for intellectual delays, mental health, illness, physical handicaps or brain injuries. The waiver allows client families to use individual, community social services in lieu of institutionalization.
That’s where Embrace comes in.
The process goes something like this: a special needs child and his or her family come together with Embrace to form an interdisciplinary team (IDT) to plan the support a child and family needs to safely maintain the child’s physical and mental health in her or his family’s home. For some clients that plan includes medical monitoring and treatments, for others, specialized day care and supervised interactions, neutral exchanges or advocating for needed services.
Embrace’s role is really two fold: offer respite to the family or primary care-giver and offer supported community living.
In addition to respite for parents, Embrace also provides supported community living (SCL) and intermittent medical monitoring and treatment (IMMT) services. As part of its SCL process, Embrace case workers work one-on-one with goal setting and skill building with clients.
“Daily living skills, hygiene skills, social skills - most of the skills we try and work on are to help them learn to live more independently,” Kalambokidis said.
Goals are developed with the client, parents and the case manager. Embrace isn’t there to replace parents, they’re there as support.
“People don’t realize how much it requires to raise a special needs child, not just for a parent but for a whole family,” said Brigitta Hebdon, one of Embrace’s first clients who now serves as the company’s volunteer communications director. Hebdon is a full-time broadcasting student and a mother of four, including a son with intellectual disabilities.
“I have three typical children and one special needs child. When we decide to do something as a family it’s always a question of determining if it’s something he can do or not. It really does come down to all being about him,” Hebdon said. “It can be very hard on a family.
Families with children with disabilities have an 80-percent divorce rate and I really think that pressure on the family is why stress becomes so hard when meeting the needs of a special needs child,” she said.
Hebdon turned to Embrace for the reason most clients do: she needed help.
“I was having issues getting anyone to come to my house and help me,” Hebdon said. “I needed help with my child so I could be doing some other things. That’s when I came on board.”
Quality of care doesn’t seem to be as much of an issue as availability. Special needs care in rural areas is a challenge. Most social services in southwest Iowa are centered in Council Bluffs and not always convenient for families with a special needs child. Adding to that is the closing of the Department of Human Services and Boys Town offices in Glenwood in the last few years and an understaffed social worker pool so over-loaded with clients they themselves aren’t aware of all the services that are out there for clients, Reeve said. Embrace has tried to fill the information gap to “point people in the right direction.”
Reeve knows those are small victories, but they’re important she said.
“If we can help someone, whether they’re receiving waiver services or not, then we’ve helped. They’re small victories but they lead to bigger ones,” Reeve said.
Knowing where to turn is often the service Embrace offers the most to its own clients and those who just come in off the street looking for answers. Reeve pointed to a recent example where her group couldn’t provide service, but that didn’t stop them from providing help.
“A mother walked in the door and said she was going to jail in a week and didn’t know what to do with her kids,” Reeve said. “I told her we don’t do that here but sit down, lets find someone who does.
“What we do is offer respite and we help train parents. If we can’t help you, we’ll find someone out there who can with a wide range or a narrow range of things out there. People who need human services the most, often don’t know where to go.”
That’s a big issue for Hebdon. Most parents like herself, when they first move to Glenwood, don’t know where to go for help.
“How are you supposed to know where to turn for help with your kids? There’s information out there on respite but understanding it and gaining access to it isn’t always easy,” Hebdon said. “That’s what Embrace has done for me and what it’s doing for a lot of people.”
Embrace is planning an excursion this June they’ve dubbed “Camp Hope.” Embrace staff and a large group of clients will camp at Viking Lake. Staff take clients fishing and hiking. They play games and they picnic.
“A lot of our kids we get there wouldn’t be accepted at other camps, whether it be for behavior or disabilities or just their needed level of care,” Reeve said.
To help cover the costs of Camp Hope, Embrace is hosting the Embrace Hope Benefit Concert at the Davies Amphitheater June 3. The concert will feature the Clarinda Academy Drum Line and several country and Christian praise acts. The show starts at 7 p.m. Tickets are $10 per person or $25 for a family.
“These groups volunteered and donated their time to perform. The amphitheater donated the space,” Hebdon said. “We’re hoping to make this an annual event.”