Aging Caregivers: Planning for the Future

Posted by The Arc of North Carolina
Author: Bryan Dooley
Ever since Ponce de Leon came to the new world, supposedly looking for the Fountain of Youth, we have been looking for ways to stay young forever. Some of us eat certain foods and take lots of vitamin supplements. Youth has also been the subject of many songs and books, but the fact is everyone eventually ages.
For understandable reasons, such as fear, many parents of people with disabilities have put off imperative planning for life transitions as they age. Although it can be an uncomfortable conversation, it’s a good idea to plan ahead of time on a personal and state level. Documented in the State of the States in Developmental Disabilities Project, In 2015, 68% of North Carolinians who receive I/DD services live at home with a family caregiver. The I/DD system in North Carolina will face a tremendous challenge as the caregivers age.

I had a personal interest in the topic of aging caregivers because, like many of you, my family is getting older. My mother, who is my primary caregiver, just celebrated her 60th birthday. She's going through a difficult aging process and id developing disabilities of her own; she has back issues and she has had surgery on both ankles. My stepfather has been diagnosed with scoliosis, so he's physically unable to perform tasks that assist me. My grandparents still insist on watching me over the weekends in their house, but we've made some adjustments due to their age. Instead of lifting me themselves to be placed in my power wheelchair, they have installed a lift that is attached to the ceiling. 

Nowadays, I monitor my family's health as they monitor mine.  One time while in college, my grandmother was helping me with a homework assignment.  She ended up having a TIA (Transient Ischemic Attack), which is basically a mini-stroke.  Luckily, I had my phone in my lap and decided to call my mother, who happens to be a nurse. After two of my aunts came to the house, they ended up calling for an ambulance.  If my grandparents weren't taking care of me that weekend, the outcome could have been dramatically different.  
According to the North Carolina Institute of Medicine (NCIOM), the general population is aging, including those with and without an intellectual or developmental disability (I/DD).  Their latest data indicates that by 2030, adults age 65 and older will account for 20% of the population, up from 13% in 2000. It is estimated that between 5,170 and 12,926 North Carolinians with an I/DD are currently over the age of 60.
Since there are already backlogs to receive assistance, Carol Conway, Chair of Parents of Adult Chldren with Disabilities, suggests that the state legislature should do more to help families. “The state needs to do more to fund Innovations waivers,” Conway said. “There is a huge backlog of people waiting for services here in Orange County- between ten and fifteen years. That is unconscionable.”
The good news is there are organizations (like The Arc of North Carolina), that can help you plan for the future today. 
Says Nicole Kiefer, Regional Director (Raleigh region) at The Arc of North Carolina: “One major roadblock in the way of people using existing services is the lack of accessible and affordable housing in many of North Carolina communities.  In the past, The Arc of North Carolina has been a major housing provider for people with I/DD, but recently we have shifted away from segregated housing arrangements and towards people being included in the planning for integrated housing.” 
Housing is only one part of a complicated system which people with disabilities have navigate as they age.  The Arc of North Carolina also provides a service called Community Navigation. This is available to people who receive Medicaid and have a verified I/DD diagnosis, and the North Carolina Innovations Waiver is not required. Community Navigators (called Resource Advocates at The Arc of North Carolina) can help you find your way through a system which can seem like a maze.  If you need services like nutrition and financial supports, advocacy with an issue that you’d like to address, or if you need to find volunteer opportunities or a paid job:  community navigators can help you. 
Kiefer has a message for aging caregivers: “It’s better to do the planning now for the future; that way if something doesn’t work out, your family member can always come back home. So many times, I get calls from people who need emergency housing because their parents have died. That’s not [an] ideal [time to reach out to us], because that’s how people wind up in assisted living and other places that aren’t the best.”