Capital Chat

Alaska is currently the only state without a Medicaid-funded self-directed care program, leaving many seniors and people with disabilities with fewer choices when it comes to receiving support at home.

In this episode of Capital Chat, Maggie Winston of Southeast Alaska Independent Living, or SAIL, explains what Centers for Independent Living do, how they support people with disabilities across every stage of life, and why self-directed care matters. The conversation explores how participant-directed care can give individuals more control over who provides their care, how services are delivered, and how they remain as independent as possible in their own homes and communities.

Maggie also discusses the slow-moving effort to bring this option to Alaska and how organizations like SAIL are advocating for systems change so Alaskans with disabilities, seniors, and families have more options, more dignity, and more control over their daily lives.

What is Capital Chat?

Discover the heartbeat of Juneau's cultural and community landscape with 'Capital Chat.' This series explores the vibrant world of the community, arts, and dynamic cultural and social events happening in Alaska's Capital City. Tune in to 'Capital Chat' for your essential guide to the pulse of our community, where every story is an adventure and every voice matters.

Speaker 1:

And now Capital Chat on KINY, where we connect you with Juneau and Southeast Alaska's community organizations only on KINY.

Speaker 2:

Joining me is Maggie Winston who is with Southeast Alaska Independent Living or SAIL. Maggie, good morning.

Speaker 3:

Hi. Good morning.

Speaker 2:

Hey. For listeners who may not be familiar with the term SAIL or what you represent and wanna participate in participant direct care, How does it change the day to day life of a a senior or a person living with disability?

Speaker 3:

Well, I would say, first of all, if you are not familiar with SAIL or a center for independent living, then I would love to brief you on that. Sure. SAIL Southeast Alaska independent living is Juneau's local center for independent living. So every state and territory in The USA is covered by a center for independent living. So this comes from title seven of the Rehabilitation Act, and what it does is designate every geographic region a center for independent living for individuals with disabilities.

Speaker 3:

So what we do is we provide five core services to individuals with disabilities across the lifespan. So there's no age range. We cover from birth to death and any disability that is recognized by the Americans with Disabilities Act. And our five core services include things like advocacy. So a lot of individuals just need help navigating, like, discrimination.

Speaker 3:

So we do individual and systems advocacy. We do independent living skills, so for individuals that might acquire a disability and need to learn how to live independently as independently as possible. We do transitions. So that's transition from a nursing home or assisted living home, but that's also youth transition. So individuals with disabilities that are in school and are transitioning into life and independent living, and so acquiring those skills.

Speaker 3:

We also do information and resources. Many people just need assistance navigating a system and kind of wondering what the where the next step is.

Speaker 2:

In Alaska, is it true that Alaska is the only state that does not offer this kind of service?

Speaker 3:

So that's absolutely true. So self directed care is for individuals that need home and community based services.

Speaker 2:

Okay.

Speaker 3:

So you imagine seniors, you're imagining anybody that's born with a disability or people that just need a little bit of hands on care at home. So the traditional way to receive services like this is with an agency, a provider agency. So this is for people with a Medicaid waiver that need help at home. And, yeah, Alaska is the only state currently that does not have a Medicaid funded self direction program. So it's really just another option and more choice for people with disabilities.

Speaker 2:

So, I guess number one is why, and number two is how do we change it?

Speaker 3:

Great questions. Number one, why? That I mean, I guess you could reach for any amount of whys, but I think maybe we just we have lower population. Maybe people aren't as aware of what options are available in other places. Alaska has been looking into self directed care for about twenty years or so, but I I'm I'm not sure.

Speaker 3:

Maybe it just hasn't been the right time. You know, I I used to work for the state for a little while, and my previous boss used to say things like, working with the state is a process.

Speaker 2:

Yeah.

Speaker 3:

And, really, what that means is that things are just they move slowly.

Speaker 2:

Wow. Okay. And how do folks interested in the service or advocacy or to help support you in in any way? How do they get ahold of you?

Speaker 3:

So if you live in Juneau, then please contact SAIL. Contact Southeast Alaska Independent Living. We work with them very closely. So I work at another center for independent living called the Independent Living Center, and we cover the Kenai Peninsula, Gulf Coast, and Kodiak Island. But we work very closely with each other and are working on this huge systems change project to make sure that everyone in Alaska can have more options and more choices when it comes to their services.

Speaker 2:

Thank you for sharing the story, Maggie, and thanks for the great work you're doing for all of our communities here in Southeast Alaska.

Speaker 3:

And thank you so much.

Speaker 1:

You've been listening to Capital Chat on KINY, your connection to the people and organizations making a difference in Juneau in Southeast Alaska. Subscribe to the Capital Chat podcast everywhere you listen to your favorite podcasts and at kinyradio.com.