Happy Aging is a unique series focused on how to help you age well. These stories have been created in cooperation with AARP and Word In Black.

Thousands of caregivers go through the important, yet daunting task of providing support to adults with special needs every day. According to a survey from the National Poll on Healthy Aging, within the past two years, more than half of adults ages 50 to 80 said they had helped an adult age 65 or older with some form of care. These tasks include trips to food pantries and doctor’s appointments, help taking medications and getting dressed. For 35 years, Sequaya Tasker has seen caregivers of individuals with developmental disabilities navigate a wide range of circumstances. She is Senior Executive Officer of Programs Innovation at The Arc

WIB: Let’s talk about people ages 50 to 80 who are helping an adult with special needs. How common is this? 

Sequaya Tasker

Tasker: It’s very common. Typically, it’s a parent – and I’ll be very transparent. I am a parent of a child who has ADHD and autism. One thing you recognize early as a parent of a child with special needs is that you’re always going to be a parent of a child with special needs. 

WIB: What are the immediate, short-term needs that caregivers have? 

Tasker: The biggest thing is planning for that child and planning on what that’s going to look like when they’re no longer there or no longer able to care for that child. They’re looking for resources that are in their community. Typically, the child with special needs has gotten used to the community they live in, so they’re used to seeing those same things. Navigating those same things can be an extreme challenge because there’s not necessarily resources that are just readily there for the caregiver to just tap right into. 

WIB: What were some of the first things you’d say people become aware of when becoming a caregiver?

Tasker: It’s a lot of trial and error. Maybe that primary caregiver passed away or is no longer able to serve in that capacity in some way, so you have siblings or another relative that may become a primary caregiver. The first resource they get would be through the state with what they call the Home and Community Based waiver. Those waiver services are very limited. The [caregivers] that are more challenged are the ones that, all of a sudden, they’re becoming responsible for this other person’s life and they don’t know what door to knock on. Unfortunately, there really is not one door to knock on. We’re talking about trying to juggle multiple – sometimes up to five to six – different resources that are available. But they’re all talking a different language. They’re talking about different eligibility requirements, different applications they’re going to have to fill out. There is not one application that can be completed and then given to each entity. 

WIB: What tips would you offer for people who are balancing self care and caring for their loved ones? 

Tasker: The biggest tip I would say to them is understanding that if you’re not well, you can’t take care of that person. The second thing is to have difficult conversations about, “Hey, when I’m gone, this is what I would like to happen and this is how we can make this the best transition for that person.”

WIB: Do they have to take on any legal guardianship to help carry out responsibilities?

Tasker: Personally, I don’t think guardianship is always the best solution for everybody. For some people, it is. But not for everybody. There is another terminology that a lot of states have actually written into legislation that’s called supported decision making. It allows the person to still be as independent as they want and still make those life choices that they want, but holistically. When you start talking about guardianship or even supported decision making, every state looks at it differently. 

WIB: Have you seen a noticeable improvement with the help that you have provided caregivers with?

Tasker: To a certain extent, I have. As a caregiver, sometimes, we just do. We don’t necessarily see. When you are pursuing something, really look into what your state has to offer because there are a lot of resources. It’s just, unfortunately, they’re not always in a quick, easy to find place. 

Read more here about AARP resources for caregivers. 

For information about The Arc’s programming, services, and chapters, go here.