When 4-year-old Maggie Loeffel suffered permanent brain damage due to uncontrolled epileptic seizures, Mary Jane and Maurice Loeffel were determined to provide the best life possible for their daughter and her siblings while they searched for a cure.
Seventeen years later and with their medical options exhausted, the Cary couple began looking for housing and employment for Maggie that would provide as much independence as possible in the sheltered setting she requires.
The Loeffels are one of more than 1 million American families seeking lifelong care options for a child with special needs who will, in all likelihood, outlive them.
In Illinois alone, there are an estimated 22,000 adult-aged children on waiting lists for an available placement in a group home or structured campus, such as Chicago's Misericordia. It is a list that continues to grow as the numbers of adult children in need expands and adults with disabilities live longer, more productive lives.
No matter how zealous the efforts, none of the state's residential placement communities can keep pace with demand. The turnover rate for residential beds is almost nil. Nearly 70 of Misericordia's 610 residents are 50 or older.
Finding a suitable home is a daunting endeavor.
Teri Bodeman, director of Family Advocacy Services at Protected Tomorrows, an advocacy firm based in Lincolnshire, says it is only one piece of an intricate puzzle that needs to be worked on and massaged to create a plan to ensure the highest quality of life possible.
Mapping successful outcomes
"We tell our families it is never too early-or too late-to begin planning for a future for their child or sibling who has disabilities," says Bodeman, a career social worker who opted into helping special families when her sister adopted a child from China who is disabled.
"There is no one plan that works for everyone. We have a wealth of resources we share with families as we discuss all that goes into a full and rewarding life while creating a structure that provides the greatest financial security, independence and quality living for that individual."
With the state of Illinois in dire financial straits and money for programming for the disabled stagnant or in decline, money certainly is part of the picture.
Mary Anne Ehlert, president of Protected Tomorrows, argues it is simply a component of all that needs to be considered.
"I had spent 20 years in banking and decided I wanted to change directions, working to help families create a financial plan for their child," Ehlert says. "At the time, I had an adult sister with cerebral palsy and had been worried about her because my parents had done no planning for the time when they wouldn't be around. They assumed the government would take care of her when they no longer could."
Ehlert easily was able to unravel the complexities of trusts and financial planning for a child with special needs and tap into precious-albeit limited-state and federal programs.
She soon learned that wasn't enough.
"Families need more than financial resources. They need to figure out where this child should live and what a quality life should consist of," she says. "The first thing every parent tells me is that they want their child to be happy. That's natural. It's normal. What we do is help them distill what that means for their child-in terms of recreation, employment, if that's possible, interacting with others and having friends. We work with one family at a time to build a plan for comprehensive care and it doesn't matter if they have $50 million or 50 cents, we help them."
Creating next steps
Liz and Andy Johnson turned to Protected Tomorrows a year ago at the advice of their son's school-appointed social worker.
Now 22, Caleb, who has learning disabilities accompanied by Tourette syndrome, no longer qualifies for Illinois Public Schools.
With the assistance of Protected Tomorrows, the Wheaton couple have a plan to help fund the extras Caleb is going to need to live a more full, independent life. The Johnsons' Special Needs Trust will supplement what is now $710 per month in Social Security payments and any additional money Caleb will be able to earn at a job.
"We were clueless and totally ill-equipped about what to do next-when Caleb would no longer be attending school," Johnson says.
On tap for Caleb is a brighter future, with a structure that provides for government assistance in helping him find employment and a job coach for up to 90 days to ease the transition.
"We updated our will and have become his guardians. That's a step many parents take much sooner than we did but we had delayed, hoping Caleb would be able to become more independent. He hasn't and we all agreed we needed to do what we can to ensure his future," she says.
"At the same time, we created a Special Needs Trust that will be administered by a third party so that our other children will not have that responsibility. We want them involved in Caleb's life. At the same time, we want them to be able to live their lives. We have put steps in place that can help Caleb become more independent, eventually living on his own in a sheltered setting."
The Johnsons had no illusions that the process would be simple-and it wasn't. Still, with the nudging and assistance of Kirsten Izatt, an attorney who specializes in assisting members of the special needs community, and the staff at Protected Tomorrows, the Johnsons stayed on track and finished the process in a little less than a year.
Envisioning the possible
Ehlert believes in helping parents create a vision for their children-one that often is difficult, if not impossible for them to consider while they struggle to provide for the day-to-day needs of the child, other siblings and family.
"Helping with the details is an important part of our job, as is knowing the programs that are available and helping access them," she says. "What we do first, though, is help parents see the possibilities their child's future can hold."
One such family is a client with a child with Down syndrome who has a major role in an upcoming film.
"When I shared that with another parent, who has a child with Down syndrome, he stopped," she says. "He had never imagined his daughter could have a life so full of possibilities."
"We ask our families: 'What is the best thing that can happen for your child's future?' We advise them to envision the highest functioning life for their child and work with us to make that happen."
Ehlert is the first to acknowledge that the state's dwindling resources, coupled with the increasing demand for residential services, makes the task more challenging.
"Sometimes, there is no housing program a family can afford. Other times, it is simply that a child needs so many services that options are limited," she says. "Somewhere out there, though, is a program that will work and we work to find it."
Maggie's next steps
Maggie Loeffel has been a resident of Misericordia for the last five years.
Her parents knew it was the best option for their daughter and worked to make it happen, but readily acknowledge it was the toughest decision they ever had to make.
Because their Northwest suburban community didn't have a workshop that could accommodate Maggie's ongoing issues with uncontrolled seizures, Mary Jane began the transition by moving with Maggie to Chicago, where she had access to a day program at Misericordia while the family waited for a permanent placement.
"There is no place like Misericordia. It truly is an amazing place," she says. "She's involved and has a life there with people her own age. She's definitely more independent. I still wish she was living here with us. I know in my heart though, that this transition would have been so much more difficult for her if she was 40 and we died and she would have to go live in a new place.
This way, she gets to visit on weekends and we go there.
"This isn't like sending a child off to college, though. It's a hard decision for any parent to make."
See more of Robin's stories here.