Many aging parents haven't finalized plans for disabled children

As we age, most of us view the future with a mix of happy anticipation and worry for our children. Those children who are doing well and on an upward trajectory don't generally worry parents much.

On the other hand, there are the children who wallow in drug abuse, depression and other similar problems that keep us awake at night. And then there are parents of children with intellectual or developmental disabilities, or IDD, such as Down syndrome or autism. These parents often find themselves searching for ways their children will be cared for throughout life.

It would probably shock most to know that as many as half of the parents of adults with special needs in this country have made no plans to deal with their child with IDD in the event the parent becomes incapacitated or dies. And in today's world, those with IDD are living longer and needing care longer than ever before.

"It was the same story 20 or 30 years ago with many parents lacking future plans, even though we know that there are always better outcomes when planning is done," stated Tamar Heller, Distinguished Professor and Head of the Department of Disability and Human Development at the University of Illinois at Chicago.

"Of the estimated 71% of adults with IDD who live with their family caregiver, an estimated 24% are (living) with caregivers aged 60 years and older and another 35% are with caregivers between 41 and 59 years old," Heller wrote for an upcoming American Psychological Association handbook.

"Both the parents and the adult child may experience greater difficulties as they simultaneously face age-related losses in health, resources and social networks," she wrote, especially when the family lacks resources.

Heller stressed the importance of preplanning by parents, with input from the individual with disabilities and other family members.

"Future planning entails not only planning for residential supports, but also for financial, legal, advocacy, vocational, social, recreational and health supports. Yet, fewer than half of families of adults with IDD make future plans, often because of barriers such as lack of finances, lack of available options, anxiety and procrastination," Heller wrote.

Unfortunately, Illinois ranks 47th among states when it comes to facilities for individuals with developmental disabilities, Heller said. Even before the recent budget crisis, Illinois had 20,000 people on a waiting list for services. Nationally, only 13% of people with IDD receive public support.

Currently, many siblings become primary caregivers for their brothers and sisters with IDD when their parents are no longer available to do so.

Heller strongly advocates planning for residential transitions into community-based supportive living situations whether in or out of the family home.

Families facing these issues also need to be sure to contact an appropriate attorney who can set up a special needs trust, guardianship, advanced health directives and so forth to benefit all involved and provide a road map for the future.

Specially designed ABLE bank accounts have also been developed to benefit these individuals and their families.

For the past 40 years, Community Alternatives Unlimited has been the "individual service coordinating agency" for people with intellectual and/or developmental disabilities living in Northwest Cook County, Lake County, the North Shore and the northern part of Chicago.

"Ours is a very culturally rich and diverse area, both culturally and socioeconomically. CAU speaks 17 different languages among our staff and employs case managers who understand our many cultures and work to offer an array of services," said Joanell Voigt, president and CEO.

Its job is to be the "front door" to services for those with special needs such as IDD, epilepsy, cerebral palsy and other conditions. It administers pre-admission screenings for individuals with special needs and then works on supports and services, utilizing about 40 community providers of group homes and in-home services.

Those they screen are enrolled in a statewide PUNS (Prioritization for Urgency of Need for Services) waiting list, a system that has been in place in Illinois since 2003. CAU also provides direct support to those in crisis by expediting necessary supports and services that may include out-of-home placement.

Voigt advised that parents should begin working to get their disabled child on the waiting list at any time but certainly by the time they are about 14, although there are circumstances under which services for younger children in crisis may be obtained using Medicaid.

Children with IDD in Illinois generally stay in school until their 22nd birthday. After that, they may seek either a residential placement or an employment/vocational training placement, depending on their needs and life experience, Voigt said.

"We try to offer them as many choices as we can."

CAU approaches each situation differently. "For those individuals with proactive and assertive families, we help with resource identification and planning. Other families need more coaching. We always want each family to feel they are in charge of the process," Voigt said.

"There is no hard, fast rule. Some families want to keep their special needs children at home, others want services and supports outside of the family home. We are there to assist. We don't make choices for them."

Misericordia on Chicago's North side, under the direction of Executive Director Sister Rosemary Connelly, is one of the best-known agencies for people with intellectual disabilities. It offers a full continuum of care to qualifying individuals in a variety of settings, based on their preferences, abilities, needs, age and level of disability. It also maximizes training and employment opportunities and addresses the growing need for services as they age.

Misericordia cares for about 600 residents in 22 homes on its 31-acre campus and in 13 off-campus CILA (Community Integrated Living Arrangement) homes out in the community. Many residents and day-program participants find fulfillment by working in various on-campus microbusinesses, including Hearts & Flour Bakery, coffee/tea packaging and the on-campus Greenhouse Inn Restaurant. Others have off-campus part-time jobs in the community.

Misericordia residents also participate in academic programs, gardening, the arts, physical education and get mobility training that teaches them how to get around on Chicago's buses and trains. Their free time is spent walking to local stores, training for the Special Olympics, swimming and other activities.

"Often the parents of children with special needs see a lack of opportunity for their children after they graduate from high school and that is when they look further into residential placement, day programs and work opportunities. At Misericordia, our residents are fully integrated into the community," said Julie O'Sullivan, director of creative arts and marketing manager.

Misericordia residents live in homes with their peers. Homes are staffed with day and overnight shifts seven days a week. "And when parents see how happy their children are here and how they can't wait to get back after a weekend at home, they have peace of mind," she said.

Misericordia also has a skilled nursing facility on campus which offers more intense care for approximately 120 people with IDD between the ages of 2 and 70 who have more severe, medically involved disabilities.

"Eighty percent of our residents enjoy the regular involvement of family members in their care and lives," said Mary Pat O'Brien, assistant executive director of residences and programs. "In fact, many parents volunteer here. Our philosophy is that Misericordia does not take your children from you, we share your child with you."

The application process at Misericordia can take more than a year and involves meetings with social services, on-campus dinners and even a four- or five-night observation. If the observation goes well, the applicant is then put on a waiting list for the appropriate residential placement within Misericordia.

There is no fee to live and participate in programming, but families (as well as individuals, auxiliary groups, corporations and foundations) get involved through volunteering and/or assisting in fundraising efforts to help Misericordia raise the nearly $20 million it needs annually to supplement money it receives from Medicaid.

Most recently, Misericordia opened the Quinlan Terrace for aging residents who need additional help. It has four homes with 15 residents in each. Down syndrome residents are prone to develop Alzheimer's disease, so Misericordia opened Quinlan Terrace to meet those needs.

Other well-known facilities in the area for those with intellectual disabilities include the Ray Graham Association and Little Friends in Naperville, Little City in Palatine and Arlington Heights-based Clearbrook, which serves clients in multiple day program facilities, provides residences in 50 locations and is the largest provider of home-based services in the state.