Series explores daily assistance for special needs adults

They are affectionately referred to as “the kids.”

But the kids of the Sun Cities are actually special needs adults who are approaching or surpassing retirement age.
And for those who are living with their aging parents, the complexity of their circumstances can seem daunting.

How can parents in their 70s or 80s — who often have their own or a spouse’s physical or mental challenges to contend with — handle the additional physical and psychological demands of caring for a special needs adult who is 50 or older? What help is there for them?

And later, who is to take care of the children once their parents are gone? How willing or capable are their siblings at assuming the role of guardians? And what if there aren’t any relatives who can step in?
What will happen when their families aren’t there any more?

The Daily News-Sun examined those and many more questions and found there are numerous special needs adults in the Sun Cities whose stories and backgrounds are as unique as they are.

CLICK HERE TO READ PART 1 OF THE SERIES.

Some were fortunate to have strong family support and advocacy to help them reach seemingly unattainable goals, and to have a future that is financially secure.

Others took a different path; never underwent any assessments or diagnosis by medical professionals, nor received any specialized care or education. And when their parents died, they were sprung into a world they didn’t know.

Some of the them had lived under their parents’ roof since they were born, while others spent at least part of it in a group home for those with special needs.

And there is at least one who spent the first part of his life as a married microbiologist with two young children before cancer and meningitis damaged his brain so badly he isn’t able to be hired for a minimum wage job.

Regardless of their past, all of the special needs adults in the Sun Cities are fortunate to live in an area that provides them with ample opportunities for socialization nearly every day.

There are three active organizations geared to providing structured social and life skills activities, and also a vocational program, for special needs adults: The Sun Cities/Youngtown Special Activity Center, Interfaith Community Care’s Helping Partners and One Step Beyond.

And there is help for those caregivers who have special needs adults at home as well, through the state’s Long Term Care System, which is part of AHCCCS — the state’s Medicaid agency — that provides respite care, attended care and special needs care, adult day care and other services.

Research into this series took an unexpected turn when it was learned that there is a link between Down syndrome and Alzheimer’s disease.

The connection is so strong, Dr. Marwan Sabbagh of Banner Sun Health Research Institute said those with Down syndrome who live past the age of 40 have a 100 percent chance of developing Alzheimer’s.

For those who have special needs adults at home and who have not considered long-term care options for when they are no longer able to care for them, this series will show them what others have planned.

For those who don’t have a direct connection with a special needs adult, it will give them a glimpse at how they and their caregivers deal with the complexities of living as and taking care of an aging, special needs adult.

It will also show how special needs adults are contributing to the community in so many ways, through volunteer work and paid employment.

And that may inspire residents to give back to them, whether it be through volunteering with one of the agencies that serves them, or showing more compassion and patience when encountering them within the community.

‘The kids’ may be growing older, but they are threads in the fabric of the Sun Cities. Their lives are being lived openly, no longer locked behind closed doors, but as valuable members of the community.

As one parent said, “They don’t hide anymore.”

Joy Slagowski may be reached at 623-876-2514, or jslagowski@yourwestvalley.com.