Thankful for SNAP: November 2018 #HandsOff

#HandsOff is a series on The Arc Blog where individuals and families across The Arc’s network share their stories about how some of today’s key policy issues impact their day to day lives.

By Anne Clinard Barnhill

My sister, Rebecca, is sixty years old and one of the most amazing and resilient women I have ever met. When she was born in 1958, autism was barely whispered among doctors. The general public knew nothing about the condition. Becky wasn’t officially diagnosed with autism until she was thirty-seven years old.

She is living life as fully as possible. She shops, goes to the Senior Center for exercise two or three times a week, goes to Weight Watchers, and continues to hone her independent living skills.  Several years ago, she participated in a program called Beyond Academics at the University of North Carolina. Innovative and person-centered, this four-year program allowed Becky to attend classes on campus, just like traditional college students — only she studied self-care, cooking, budgeting, and other independent living skills.

After graduation, she made the choice to live independently with a roommate. They split the rent and utilities, but food is purchased on an individual basis. Becky blossomed in the independent living situation. She made friends and learned her way around Wilmington. She cannot yet use public transportation, but that is one of her goals. She has procured a part-time seasonal job, which she loves. She works one afternoon per week from Memorial Day through Labor Day.

One thing that makes this life possible for her is the Supplemental Nutrition Assistance Program (SNAP). Millions of people with disabilities, like Becky, rely on SNAP to access the food they need. Last week, SNAP helped Becky prepare for Thanksgiving as she was able to gather the ingredients she needed to prepare a tasty meal, with help from family and friends.  Support from SNAP helps her to purchase to healthier foods like fresh fruits and vegetables. As a breast cancer survivor, she needs to eat a lot of fresh food to help keep a recurrence from happening. She makes wise choices with her SNAP food monies and this helps keep her healthy. If SNAP were taken away, she would be forced to purchase cheap processed foods and would rarely afford fresh produce.

SNAP enables Becky to continue living independently. She is happier, healthier, and SNAP helps make it all possible. I beg Congress to protect the SNAP program.

Becky has the courage of a lion and the heart of tiger. She has braved many situations with dignity and such gumption. She needs a little help from her friends — don’t we all? SNAP is her friend and I pray she continues to receive this, as without SNAP, her whole life — the life she has built brick by brick — will be at risk of tumbling down.

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.