Editor’s note: This is the first of a two-part series on fetal alcohol spectrum disorder, its cost to the state and how state funding impacts access to community-based healthcare services which varies from county to county.
Renee Feist felt overwhelmed.
Her adopted daughter, Claire, was having trouble in school and at home, needed constant supervision. Talking Claire into getting dressed could take half the morning. Trips to the grocery store often ended with Renee having to carry the preteen Claire back out to the car. Letting the 13-year-old cook her own food was out of the question.
Claire would either explode or shut down, reacting to nearly any given situation with extreme emotion, constantly overwhelmed by the smallest of things — too much light, loud footsteps, crowded rooms.
On the outside, Claire looked like a typical middle schooler.
Developmentally? She was more like 6 or 7 years old.
“Last winter, a year ago, I ended up quitting my job because things were so rough,” Renee Feist said.” I ended up going into a depression. Things were just so bad, I didn’t know what to do anymore.”
Claire Feist, now 14, is one of more than 50,000 Minnesotans struggling with fetal alcohol syndrome and the spectrum of disorders that accompany it.
Her needs are so great, her parents have had a hard time meeting them all. That’s one of the reasons Feist, who lives with her husband in Janesville, quit her job — to spend more time with her daughter.
But it’s a sacrifice the parents of children with fetal alcohol spectrum disorder (FASD) shouldn’t have to make, Feist said.
Rural, outstate Minnesota counties, like Le Sueur and Waseca counties, should have more resources available for the parents of children with FASD. And parents should be able to figure out how to access them before they hit rock bottom.
“It’s not that I want to criticize our county, Waseca County,” Feist said. “I want them to be better. We need more support.”
yet prevalent disorder
Fetal alcohol syndrome (FAS) is a condition that results from exposure to alcohol during pregnancy, according to Mayo Clinic. Sometimes called an “invisible” disorder because those who suffer from it are often misdiagnosed, under served and misunderstood, FASD affects nearly 40,000 newborns a year in the United States.
Problems that may be caused by FAS include physical deformities, mental retardation, learning disorders, vision difficulties and behavioral problems. The problems caused by fetal alcohol syndrome vary from child to child, but defects caused by fetal alcohol syndrome are irreversible.
In Claire’s case, the effects have been severe, Feist said. Because Claire’s birth mother drank while she was pregnant, the teen has permanent brain damage.
Though 14, developmentally she resembles a second- or third-grader. She also has sensory issues — Claire is overwhelmed easily by loud noises and bright lights, Feist said. The teen has a hard time remembering how to perform simple tasks like brushing her teeth and cannot be left unsupervised.
“We’ve had a couple fires,” Feist said. “But it’s not because [Claire] is goofing around or anything. She just doesn’t know. She doesn’t know she can’t use a plastic pot. She doesn’t know how to cook for herself or make grilled cheese … These kids have higher needs. They need more time, extra time to learn math or reading. Even to learn how to get dressed or brush their teeth, they need more time.”
To help keep an eye on Claire, the Feists employ a personal care assistant, sometimes referred to as a PCA.
“We have a PCA that comes in and help her with the repetitiveness of coming home, doing a few chores, doing laundry, dishes … the things most kids can do by themselves,” Feist said.
Feist said she isn’t sure what she would do without the extra help. But finding the money to hire an assistant was challenging.
At one time, Feist had two jobs. Her husband was working overtime. After quitting her job a year ago, Feist said figuring out what to do next was difficult. When you’re depressed and overwhelmed, it’s hard to think of solutions.
“When you’re so caught up with everything at home, you’re not thinking about what services are available,” she said.
Eventually, Waseca County Human Services got in touch with the Feists and asked if they needed help. With the help of a social worker, the family applied for and was granted a developmental disabilities waiver, which provides provides funding for home and community-based services for children and adults with developmental disabilities or related conditions.
The waiver has made it possible for the family to hire a PCA. They’ve also been able to set aside money for Claire to go to a camp for FASD teens.
But Feist said the resources available to Claire overall are lacking.
The teen is eligible for a second type of waiver, a community alternatives for disabled individuals (CADI), but there are a limited number of the waivers available not only locally, but statewide.
In 2011, $64 million in cuts were made to the state’s home and community-based service program, effectively putting a cap on the number of people that could receive waivers. Other reductions to the state’s health and human services budget resulted in cutting payments for personal care attendants 20 percent.
A 2014 supplemental budget bill, now being negotiated by the House and Senate, would provide a 5 percent or $80.36 million increase for the waiver program, restoring some of the lost funding.
But the number of waivers available in each county will still be capped off — each county in the state is allocated a certain number of CADI waivers or waiver slots each year and can only provide services to a certain number of people.
All the slots in Waseca County are currently full.
“In order to get on that CADI waiver, somebody in the county has to get off of it first,” Fesit said, adding that money from the CADI waiver can be used to pay for a wider variety of services than money from the DD waiver, including independent living skills training.
Many children born with FASD spend much of their life living at home. With training, Claire might be able to live more independently.
Nearby, in Mankato, Kari Fletcher has had more luck getting access to services. Fletcher’s two youngest children, 11 and 16, both have FASD.
Like the Feists, the Fletchers employ a PAC and have waivers. They also have a very helpful county case manager, Fletcher said. A former member of the Minnesota Organization for Fetal Alcohol Syndrome, Fletcher said she knows it isn’t always easy to get a waiver when you need it.
“There’s a waiting list for services, sometimes years long,” Fletcher said, adding that the wait varies from county to county and depends on the number of slots available.
There are currently 1,200 people waiting for CADI and similar waivers statewide.
To determine how many CADI waivers a county receives, the Minnesota Department of Human Services uses a methodology based on several factors, including the county’s population, the percentage of people in the state waiver program that live in the county and how many people in the county are on the state’s waiting list for services.
As of January 2012, Waseca County was allocated 48 of the 16,395 CADI waivers available statewide. Blue Earth County was allocated 186.
Both counties have less than five people on the wait list, making it less likely they will be awarded extra CADI waivers while those waiting for them are receiving other services or other waivers.
Nearby Le Sueur County is allocated 75 CADI waivers and has no wait list. Nicollet County has 76 CADI waivers and Sibley County has 35.
Wait lists for DD waivers are longer and as of April 1, 2014 there were 3,563 people waiting for the DD waivers statewide.
Though there are less than five people from Waseca County on the DD waiver wait list, there are 14 from Blue Earth County. In Le Sueur County, 11 are on the wait list and in Nicollet County and Sibley there are five.
Many of the people waiting for a waiver receive home care or other services in the meantime, according to DHS representatives.
The waivers, however, offer more flexibility, allowing those who get them to choose where to receive services, whether it be at home or in the community, rather than at an intermediate care facility.
A child born with the fetal alcohol syndrome will use about $1 million to $5 million in public services during the course of their life, according to findings of a national study. The Minnesota Organization of Fetal Alcohol Syndrome estimates FADS cost Minnesota $107.4 million annually.
Sara Messelt, the organization’s executive director said the resources available to those with FASD vary greatly from county to county, partially because the term applies to such a broad spectrum of disorders.
“We have oftentimes, children that have really unique challenges, and we’re trying to figure out as a community what those children need to do best in the in the school setting, in the home setting,” Messelt said.
Though it was determined in the 1970s that alcohol consumption during pregnancy can have long-lasting effects on a child’s development, research into how to help children with FASD is still sparse, Messelt said. And because the effects of FASD can be so wide ranging, it can be difficult to determine how much support a child needs, she said
“Every child kind of needs a different set of services to help them be successful and that often I think is the problem,” Messelt said. “It’s not every size fits all.”