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Celebrating National Caregiver Month With The Arc Wisconsin

The Arc Wisconsin State Director Lisa Pugh stands in front of an exhibiting booth smiling and holding a computer. Each November, we observe National Caregiver Month – honoring those who devote their lives to providing care for individuals with intellectual and developmental disabilities.

The daily demands of caregiving for individuals with I/DD and elderly adults can be challenging, and the commitment of time and resources that goes into ensuring a loved one’s well-being leaves little time for personal goals, professional duties and planning for the future.

At The Arc Wisconsin, Lisa Pugh is working hard to take a leadership role in the fight to support caregivers throughout the state.  

One of the largest groups that make up the caregiving population are family members and loved ones. What is future planning and why is it important?

Future planning is creating a guide for a person with I/DD to lead a good life as independently as possible. A plan is important throughout all stages of life, especially during transitions, and especially in the future after the parent or caregiver is no longer able to provide support.

About 2/3 of the more than 50,000 people with I/DD in Wisconsin live with their families, and there are 16,500 vacant paid caregiver positions. In many of these families, the main caregivers are over age 60. When it comes to thinking about the future, Wisconsin families are like everyone else across the country- they don’t have a plan in place, even though they know they should.

Without a plan in place, those families can easily go into crisis. Many families feel overwhelmed, aren’t even aware of future planning options and resources, and need support to navigate the process.

Many families think future planning is mostly about finances – but good future planning is about so much more. It is about daily routines and future plans about where to live and work. It’s about growing people’s independence in their own decision-making. It really is a holistic look at someone’s life and how to secure and plan for their success and happiness.

What are you doing to meet this need?

We are working hard to expand access to future planning information. Trained planners help Wisconsin families work through common and difficult barriers. Since January 2018 we have trained 25 professionals who have supported more than 123 caregivers and families to begin development of a future plan. The Arc Wisconsin’s network of trained planners reached over 33 towns and cities.

We are also conducting outreach to identify systems barriers, advancing recommendations from a recent respite summit, and offering future planning workshops across the state.

You can learn more about our future planning efforts by watching this short video.

You were recently appointed co-chair of the Wisconsin Family and Caregiver Support Alliance. How can other chapters and organizations utilize coalition cooperation to better serve caregivers?

Caregiving as an issue that many populations are struggling with and many people are affected by. In our state, The Arc Wisconsin has chosen to work alongside aging and dementia advocacy groups to find solutions to support families. Our Alliance is tackling challenges in workgroups to address commonalities like lack of respite care, the need for caregiver support, complicated systems navigation, cultural competence and the need for employers to better support their caregiver employees. We are having success on all of these fronts by working together. In 2019, we plan to publish results of several surveys that we hope will lead to policy changes and perhaps redirected or new funding.

We will kick off this year’s Family Caregiver Month celebration with an Alliance press conference in the Governor’s Conference Room of our state capitol with storytelling by caregivers and presentation of a Governor’s proclamation.

What advice do you have for other chapters looking to expand their efforts in supporting caregivers?

Getting out and talking directly to caregivers has brought credibility to our efforts. Over the last year, The Arc Wisconsin has presented on future planning to groups of caregivers and professionals at Aging and Disability Resource Centers and at other events and conferences throughout the state. We have put on webinars, provided in-service training, and are widely distributing The Arc’s excellent future planning resources. Often communities are just starting to become aware of the fragile situations where elderly moms and dads have an adult son or daughter with I/DD living at home while they continue providing most or all of the care. Future planning is essential in these situations and chapters of The Arc are poised to lead the way in tackling it.

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My evolving relationship with my sister with Angelman syndrome

By Amberley Romo

It’s now been almost five years since I first wrote about future planning. I was 22, and living in Washington, DC — 1,300 miles away from my family in Dallas.

At the time, my sister Caroline was 18. We were both entering new phases of our lives. I was fresh out of college, and she had just reached legal adulthood. (Her birthday milestones honestly were always more striking to me than my own). Caroline was born with a rare neuro-genetic disorder called Angelman syndrome. The prevalence of AS is estimated to be somewhere between 1/12,000 and 1/24,000.

I was in third grade when we finally discovered my sister’s diagnosis. I know, because my mom tells the story of how I went to school, and told my third grade teacher that I was worried about how I would take care of Caroline when something happened to our parents.

Years later, when my parents took our family out to dinner to celebrate my high school graduation, I have a perfect memory of sitting at the table feeling deeply guilty, and near tears. I was soon to move to DC for college. At the table, my parents expressed how important they thought it was that I go. When I later moved away to college, it was deeply unsettling for about a semester. Everything I had to do every day suddenly only revolved around, well, me.

The years passed, and I thrived in DC. I love that city. It’s my home away from home. But I felt those tugs. Sometimes the feeling was quiet, sometimes it was loud; but it was there. Feeling too far away, feeling too selfish. Feeling the desire to be a present fixture in the lives of my family members — to be a more active part of Caroline’s care network.

I’m now almost 28; she is almost 24. I lived in DC for eight years. Two years ago, I moved back to Texas. For one of those years, I lived in Dallas. It’s hard to explain the internal battle between feelings of obligation and not knowing with any certainty what you really want, personally. But you know what I’m talking about. It’s part of the human experience. It has nothing specifically to do with having a sibling with disabilities. It’s a universal experience. This is just a particularly salient part of how I experience this struggle. None of us can know if we’re making the right choices; We just do what we can, and keep moving forward.

What I can say with certainty is that living in closer proximity to my sister deepened our connection considerably. When living further away, I could still say hi to her on the phone. (Or like when she somehow figured out how to FaceTime with me while I was at work and she was in class).

Amberley and Caroline

But living back home, she would spend the night over at my apartment. We’d make dinner, and watch The Great British Baking Show. She loves to watch my pet rabbits run around. I got back in sync with her nonverbal cues, and she got back in sync with my micro-movements. (I swear to you she can tell when you’ve had a thought, and haven’t even said anything yet — her emotional intelligence is through the roof). It’s these subtleties that were difficult — near impossible, even — to maintain, in a long-distance relationship with her.

Amberley and Caroline

There’s no right decision for me, or for other siblings. But I can say for certain that I don’t regret moving back to be closer.

I was reflecting on these past ten years just recently; I was doing some work in a coffee shop, and a family came in. A mom, dad, older sister and younger brother. The younger brother had Down syndrome. They were all hanging his art on the coffee shop wall. As I understand it, the sister had independently reached out to the coffee shop about featuring her brother’s work, and the other artist currently featured on the wall had volunteered to share space. As I chatted with them, and watched as they arranged his art, I had an odd sense of deja vu. Reflecting on being the sister’s age, and pondering college. (She appeared to perhaps be in high school). These thoughts can feel so isolating, but they are such a deeply shared experience. Meeting them by happenstance reminded me of that.

Growing up feels like continuously uncovering that behind the tapestry is a mess of loose ends. From chaos, comes order (or at least hindsight). When I was younger, I worried about Caroline’s future with a general sense of anxiety. Now that I’m older, I worry about increasingly complicated specifics. We have been having active planning conversations for years, and on some level, it grinds away in the back of my brain nonstop. Despite working so proactively, we still don’t feel close to having an answer, or feeling prepared.

I hope that for anyone reading this, these thoughts inspire thoughtfulness, not paralysis. I accept that we can’t ever know anything for certain. It can be overwhelming, but I fervently hope that other siblings and families don’t shy away from these conversations.

Amberley Romo is a software developer in Austin, Texas. She is part of a project to build a free, open-source, web-based communication app.