advertisement

Advocates assure caregivers: Help is available

Among the stress factors in the life of Bonnie Liltz was this: the fear she was the only person who could adequately care for her daughter, who lived with disabilities.

Liltz, 57, of Schaumburg, was found dead of an apparent suicide Nov. 25.

Her death came two days before she was to return to prison to continue serving a four-year sentence for involuntary manslaughter in the death of her daughter, Courtney, who died May 27, 2015, after Liltz gave her a fatal dose of drugs.

Courtney had cerebral palsy and needed round-the-clock care from the day Liltz adopted her in 1992 to the day of her death, at age 28.

Liltz repeatedly said she took Courtney's life because her own health was failing and she didn't know who would care for her daughter.

"I am having difficulty breathing now. If I go first, what will happen to her?" Liltz wrote in a note she left in 2015 after feeding Courtney the drugs. "I don't want her to live in an institution for the rest of her life. She is my life."

Advocates say they know it's stressful to lose an element of control by allowing someone else to care for a child with disabilities. But help exists throughout the suburbs, they say, allowing caregivers who take advantage of it more energy to be supportive parents.

For some of Courtney's adult life, Liltz took advantage of daytime help from a nursing facility in Cook County. Still, in an interview with the Daily Herald this fall, Liltz said she worried over Courtney's future.

"I said, 'God, if I am dying, what's going to happen to Courtney?' I don't have anyone to come in and take care of her. My parents are well into their 80s, my sister works full time, and Courtney was pretty much a full-time job."

Parents say they understand the worry, the ever-present need, the labor of love it is to ensure a child with disabilities is well-attended.

"It's almost an anxiety. It's like a codependent need," said Becky Pundy of Lisle, a mother of two girls with disabilities who founded a support group called Respite Endowment Organization in 2013. "'If I don't take care of this person, who am I?'"

But advocates say several well-qualified disability service providers in the region offer real help, so no caregiver is alone.

"There are exceptional service providers in the system that can meet people's needs," said Kim Zoeller, president and CEO of the Ray Graham Association in Lisle, which helps roughly 2,000 adults and children who have disabilities with residential, recreational, occupational and family support services.

"I wish that families would reach out and get the help they're looking for, or trust the help that might be available to them."

To get help for a person with disabilities, caregivers must connect with their regional service coordination agency and apply for placement on the state's PUNS list, which stands for Prioritization of Urgency of Need for Services.

The list allows caregivers to request personal assistance, therapy, transportation, job support and residential care, among other levels of help funded through Medicaid.

Although in some cases it takes years for assistance to be available, the PUNS list can unite people with disabilities with organizations such as Ray Graham in Lisle, Clearbrook in Arlington Heights, Little Friends in Naperville, or Marklund in Geneva - all of which provide vital services.

Parents may feel stress or guilt about allowing someone else to care for their child, but Pundy said it's necessary. Parents need to maintain their own health to care for their children, and that means taking a break, planning for the future and building a network of support.

"I do have sympathy for these parents," Pundy said. "But you have to take care of yourself."

Care options for people with disabilities

Providers say many suburban agencies provide quality care for people with disabilities so caregivers don't have to go it alone. Here are a few disability service providers from across the region.

Clearbrook, Arlington Heights

Serves 8,000 people with developmental and intellectual disabilities each year at 50 sites across the suburbs. Services include day programs, employment programs, residential care and clinical services.

(847) 870-7711

<a href="https://www.clearbrook.org/">www.clearbrook.org</a>

Marklund, Geneva

Provides residential and day programs for children and adults with disabilities in Geneva, Elgin and Bloomingdale.

(630) 593 5500

www.<a href="http://marklund.org/">marklund.org</a>

Ray Graham Association, Lisle

Serves roughly 2,000 children and adults with disabilities each year at 40 sites. Services include residential care, employment, life skills development, recreation and family support.

(630) 620-2222

<a href="https://www.raygraham.org/">www.raygraham.org</a>

Little Friends, Naperville

Offers a school, adult day services and residential living options for children and adults with autism and developmental disabilities.

(630) 355-6533

<a href="https://www.littlefriendsinc.org/">www.littlefriendsinc.org/</a>

Article Comments
Guidelines: Keep it civil and on topic; no profanity, vulgarity, slurs or personal attacks. People who harass others or joke about tragedies will be blocked. If a comment violates these standards or our terms of service, click the "flag" link in the lower-right corner of the comment box. To find our more, read our FAQ.