Concerns mount for aging parents of disabled

“What will happen to my children if I die?”

This fear is common among young parents anxious that their children be well provided for should tragedy strike. But it’s also an increasingly common fear for older adults — particularly those who serve as primary caretakers of children with disabilities.

According to a 2012 study by Dr. Tamar Heller, head of the Department of Disability and Human Development at the University of Illinois at Chicago, approximately 76 percent of people with developmental disabilities live at home, and in 25 percent of these cases, their primary family caregiver was over the age of 60. Such statistics lead to the growing reality that parents with adult children with disabilities must plan ahead to make sure their loved ones will remain happy and healthy as they age and, eventually, in their absence.

That reality resonates with Carol and Pete Diulus of Bethel Park, Pennsylvania, whose son Jonathan, 23, has autism.

“As Jonathan passed 21, the reality of him being in the ‘real world’ has become more obvious,” Pete said. “The shelter and safety of being in the school system has been replaced by trying to find the best place for him to be happy and productive each day.

“It’s a real concern for families,” he added. “In fact, it’s the biggest concern we have as parents.”

Searching for solutions

To address that concern, Knights Council 8600 of St. Mary of Sorrows Catholic Church in Fairfax, Virginia, has established Marian Homes, Inc., a nonprofit corporation that purchases and maintains group homes for adults with intellectual disabilities.

Marian Homes recently opened its third residence in Fairfax County. Named Queen of Peace, it is home to five men with disabilities who live together in a family-like environment. Its other homes, Marian House and Regina House, provide for five women and five men, respectively. The homes are operated in partnership with Chimes, Inc., a nonprofit that supports persons with intellectual disabilities.

“The entire program is based on respecting the individual person,” said Father James Barkett, pastor of St. Mary of Sorrows in Fairfax. “We believe each person is created in the image and likeness of God, is worthy of respect, has dignity and value, and is deserving of a home in a safe, loving environment.”

Father Barkett sees the Marian Homes project as Catholic social teaching in action and believes the Catholic identity of the homes is important.

“Family members are often more comfortable with their loved one in a home with Catholic ties,” he said. “There is a confidence in the level of respect for each person.”

Parishioner Rose Piriak agrees. Piriak’s brother, Peter, 67, has lived at Regina House since its opening in 2010.

“It was very difficult for my parents,” Piriak said. “Although Peter and I were always very connected, our parents had great concern about Peter’s lifetime care.”

Peter’s transition from institutional housing to a private residence was made easier by the Knights’ partnership with Chimes, his sister noted.

“When I come to visit Peter, the respect they show him comforts me,” she said. “This is a happy person, happier than I’ve ever seen him.”

Heartwarming friends

More organizations and individuals are finding ways to help. In eastern Tennessee, Catholic Charities offers a program providing independent living for adults with a diagnosis of chronic mental illness. The homes are located in Knoxville, Maryville and Morristown and are partially staffed by volunteers.

“People with intellectual disabilities are near to my heart, and the Holy Spirit placed this opportunity before me,” Mary Wright, one such volunteer, told Our Sunday Visitor. Wright cooks and gardens, but what she and the residents enjoy most is simply chatting at the kitchen table.

“They just want someone to sit and talk with them; to validate them,” Wright said. “We go to the food pantry, run errands and go to high school baseball games, but the best gift I can give them is to make them feel good about themselves. Often that means simply listening to them with an open heart.”

In order to help each resident achieve the highest level of independence, John Bohacek, case manager for the program, said that residents must be able to manage their own medication and perform activities such as cooking or cleaning. He and the volunteers simply “lead from behind.” He cites examples such as grocery shopping, where “our friends know what they want; we simply help them make better decisions.”

Seeing the need

Like the Diulus’, Anne Bradley, of suburban Philadelphia, faced similar apprehension for her son, Kevin, who has autism. Inspired by the well-known L’Arche Communities and its founder, Jean Vanier, Bradley discerned her own mission to establish a group home for men. She shared her dream with her spiritual director. “I told him I lacked money, connections and experience, and all I have is a mother’s heart for my son, Kevin. He replied, ‘That’s all you need! God will do the rest. He has plenty of money!’”

The result was the opening of Emmaus Home in Essington, Pennsylvania, last year. Kevin, now 23, lives in the home that accommodates eight individuals along with three house parents. The house parents agree to live in community with the residents for a year. Bradley said the mission of Emmaus Home is clear: “Our Catholic identity and the Gospel of Life drives who we are and is integrated throughout all we do.”

Initiatives like Bradley’s is key for meeting the growing need of parents and their children. For those considering such a decision, Father Barkett had words of encouragement.

“Don’t be afraid to think outside the box and don’t be afraid to think big,” he said. “The first Marian Home came about because the Knights saw a need, asked, ‘what can we do,’ and tried something. Three houses later, they are already looking at opening another. It’s amazing what God can do with a willing heart.”

James K. Hanna holds a master’s degree in theology and is an online instructor for the University of Notre Dame’s STEP program.