When parents of people with disabilities reach the breaking point

PART 1 IN A SERIES

Editor's note: This is Part 1 of "Caregivers Crisis: When help isn't enough for parents of disabled adults," a three part series. Part 2 | Part 3

Stephen Boisse will never forget the boy's death.

The details haunt him. The death seemed to touch every facet of his own life.

The boy was 14.

Killed four blocks from where Boisse lives.

An eighth-grader in the school district where Boisse sits on the board. Severely autistic. Drugged and stabbed by his mother and godmother, who also tried to kill themselves.

Boisse, the CEO of a Lisle agency for people with disabilities, knew he had to do something. To him, the death of the boy in River Grove was gruesome, tragic, unthinkable, preventable. And it's hardly the only one of its kind.

Since that killing in 2013, a disturbing trend has emerged in the suburbs among a small number of caregivers for people with disabilities who often are unable to get all the help they need - or any help at all. Boisse sums it up like this:

“It seems like we have parents who are reaching the end of their resources, and the only option they're seeing is to make the pain stop and to do that by taking the life of their child,” he says. “And then themselves.”

River Grove, 2013. Elmhurst, 2014. Schaumburg, 2015. Barrington, 2015. Oak Forest, 2016.

In each of these places, a person with disabilities was killed by a parent.

In the Elmhurst case, it was two disabled siblings - a 48-year-old man and 57-year-old woman - killed by their 82-year-old father who then turned the gun on his 82-year-old wife and himself.

In Schaumburg, a 28-year-old woman with cerebral palsy was killed by her then-55-year-old adoptive mother, who now is appealing her sentence of four years in prison.

In Barrington, a 35-year-old with developmental disabilities was killed by her 69-year-old father, who then killed himself.

In Oak Forest, a 54-year-old man killed his 18-year-old autistic son, his 55-year-old wife and himself.

“I don't want that to happen again,” Boisse would think each time he'd hear news of what he calls an “emerging crisis.”

“I don't want to see any more parents hurt their child.”

So he did something.

What he created won't solve all the problems parents of disabled adults face, especially as they encounter their own struggles with aging, health, mobility and mortality. What he created can't reach all of the struggling parents of adults with disabilities in Illinois, where an estimated 32,732 such adults live with caregivers who are 60 or older and 18,671 are on a waiting list for state-funded housing or other services.

But what he created is making a difference and has been for a year and a half.

Called the Parent Support Project and operated out of DayOne PACT in Lisle, the group is led by Gina Danehl, a clinical social worker who has a son with autism.

Parents participating in the group learn they have more in common than they ever would have guessed.

They connect over fears about the future, the isolation their children face, their children's medical, mental and developmental needs, all the money it will take to properly provide for them, and where on earth those children will someday live. They hear from experts who can provide answers to some of these taxing, tiring, thought-provoking questions. They and their children live to see another day. And that's a victory.

“Sometimes there are very difficult conversations that they're having in talking about feeling really hopeless. But I think there's comfort in knowing they can talk about it,” Danehl says of the roughly 225 parents she's helped through the program. “As they start talking and realize that most of the other parents are in very similar situations, they start identifying. They're really supportive of each other. ... There's no judgment.”

Parents leave each meeting feeling, possibly, a little lighter, their worries not lifted but validated, their fears not conquered but understood.

Burden of care

The Parent Support Project is just one solution to myriad challenges faced by parents as their children with disabilities grow into adults.

Special-needs financial planners who give away their expertise in free seminars offer another solution, and so do planning businesses that scale their services to levels parents can afford.

Mary Anne Ehlert, whose sister had cerebral palsy, does so with her Linconlshire-based business, Protected Tomorrows. She helps parents develop what she calls “a quasi-retirement plan for your child's life.”

“If we can transition them into a safe life that's fulfilling when we're alive, then when we pass away, they're sad just like anyone else,” she says. “But to have them sad and without resources is not OK.”

Ehlert has been helping families with planning for 30 years, but she says even the guidance she offers is not always enough.

Caring for a child with an intellectual or developmental disability is a nonstop toil of love that gives parents purpose and becomes their life's work - to the point many feel only they can do the job.

Bonnie Liltz said as much. The Schaumburg woman is appealing her sentence to four years in prison after she admitted to feeding a deadly overdose of prescriptions to her 28-year-old daughter with cerebral palsy. Dealing with her own serious health problems, she wrote down her deepest worries before giving Courtney the medication and taking what she intended to be her own fatal dose.

“I am so sorry to put you all through this, but I can't leave my daughter behind,” Liltz's note said. “I am having difficulty breathing now. If I go first, what will happen to her? I don't want her to live in an institution for the rest of her life. She is my life.”

Desperation point

The care parents provide their children - some of whom need around-the-clock attention - is born of love, but it's often thankless and comes without proper support.

Many, like Patricia Fisher of Naperville, find that the stress and exhaustion affect their own health. The single parent of a 30-year-old son with Down syndrome, she tries daily to rouse him from depression while tending to his needs and trying to envision his future.

“It's starting to take a toll mentally and physically,” she said.

Research by the University of Illinois at Chicago's department of Disability and Human Development found most people with disabilities live with their families - even well into adulthood. Families providing housing and care for adults with disabilities are often uncompensated, racking up stress and isolation with nothing in return.

“It's actually saving the state billions of dollars, literally, and yet there are no real services for caregivers,” said Sandra Magana, a UIC professor in the department of Disability and Human Development.

The state - after a yearlong budget standoff - began making payments to providers that offer respite, which is temporary care for children with disabilities so their parents can catch a breather. But suburban organizations that provide respite, such as the Ray Graham Association and Respite Endowment Organization, both in Lisle, don't know if state funding for the service will continue. It's an extra challenge within a system that already is geared toward children, overlooking the needs of older disabled people and their parents, said Becky Pundy, a mother of two daughters with disabilities who founded Respite Endowment Organization in 2013.

“It's such a hard job to do this,” she said. “Parents get to the point of desperation if they're not helped.”

Waiting for help

Once people with disabilities reach the day before their 22nd birthday, the state no longer guarantees them any assistance. Along with the long waiting list for state services, the end of school at age 22 is a major reason parents of disabled adults lack the help they need.

The waiting list is called PUNS, or Prioritization of Urgency of Need for Services. Individuals with disabilities and their families must apply through a regional service coordination agency such as DayOne PACT to be placed on the list.

The PUNS list is 18,671 people long - nearly enough to fill the United Center. Those who are waiting in many cases have needs that are pressing - for personal assistance, therapy, transportation, employment - yet not dire enough to be classified as a “crisis,” which the state strives to address in 24 to 72 hours, or “emergency,” the next-highest priority.

“It's literally for people in crisis and it shouldn't be that way,” says Judy Ruffulo of East Dundee, an education advocate for parents of children with disabilities and mother of a son with autism. “Individuals with disabilities should not have to be homeless and flat broke before they get help.”

Waiting through a long stay on the PUNS is the norm, advocates say.

“People can't get into services on a timely basis,” Boisse says. “We've got to reach out to parents, especially those who might be at greater risk - older parents who do not have services, single parents.”

These parents can receive some kinds of help through other government programs, but qualifying is the trick, says Mike Walther of Oak Wealth Advisors in Deerfield, a special needs financial planner.

People with disabilities must prove they're incapable of earning roughly $1,000 a month and must have less than $2,000 in their name to be eligible for supplemental security income of $733 a month.

Knowing that won't cover living expenses, parents who want to save more for a child with disabilities must do so in a special needs trust to keep the resources out of the child's name, Walther says. Setting up such a trust in itself can be costly - often around $5,000 to hire a lawyer who will handle the complex legal maneuvering and do it right.

That means parents are acting not only as Mom or Dad but also as lenders, lawyers, financial planners, nurses, baby sitters, chauffeurs, property managers and therapists to their children with disabilities - not to mention trying to hold down at least one job to keep the family afloat.

While parents know their child best, they often are not trained in these skilled support roles or in managing the behavior and health of people with intellectual or developmental disabilities. This, coupled with the existential difficulty of admitting one's own mortality and attempting to plan for a future past one's own life span, leaves aging parents of adults with disabilities in despair, those who serve them say. “It's very simple. They've lost hope,” Boisse says. “They live 24/7 with a child who has certain types of needs. Those needs have exceeded the capacity of the parents to deal with.”

Caregivers crisis by the numbers

220,000: Estimated number of people with disabilities living in Illinois

32,732: Estimated number of Illinois residents with disabilities living with caregivers 60 or older

18,671: People with disabilities on the waiting list for state services

$2,000: Maximum assets people with disabilities can have in order to receive government benefits

225: Parents reached by the Parent Support Program at DayOne PACT in Lisle since early 2015

47: Illinois' rank for how well Medicaid programs serve people with disabilities

21 years and 364 days: When Illinois students with disabilities are no longer eligible for public school services

Sources: 2015 State of the States in Intellectual and Developmental Disabilities report by the University of Colorado; Illinois Prioritization of Urgency of Need for Services list; Oak Wealth Advisors; DayOne PACT; 2015 Case for Inclusion report by United Cerebral Palsy