CNF: Can you tell me a little bit about yourself, your background and how you became involved with The Arc?
Liz Mahar: My name is Liz Mahar and I am the Director of Family and Sibling Initiatives at The Arc of the United States. I joined The Arc in 2014 and my portfolio of work focuses on future planning, health, sibling, and development initiatives. Prior to joining The Arc, I worked at a public relations firm and for a couple of Members in the U.S. House of Representatives. I grew up in Southern California and have lived in the DC area now for over 20 years.
What brought me to The Arc was my experience as a sibling – my younger sister, Crystal, has Down syndrome and lives at home with my mom in California. Crystal works at a senior center and loves writing, drawing, and keeping in touch with friends and family through texting. Growing up, our family’s future plan was “Liz will take care of Crystal.” I didn’t know what that quite meant but was absolutely on board with supporting Crystal throughout our lives. However, when our father passed away 15 years ago, I quickly realized that there were not many details to the “Liz will take care of Crystal” future plan. At that moment, I realized that I needed help and we needed to sit down with Crystal as a family to think through the details of her future plan. That experience is what inspired me to join The Arc.
What is The Arc’s Center for Future Planning and how can it help families?
Established in 2014, The Arc’s Center for Future Planning supports and encourage families that include someone with an intellectual and/or developmental disability (IDD) to plan so that the person with IDD enjoys a good life that reflects his or her own preferences once the caregiver can no longer provide support. The resources we have on our website are free and a great way to get started on learning more about what should be included in a future plan. We also offer a variety of plain language materials, videos, and archived webinars that families and people with IDD can access for free. You can also sign up to receive email updates from The Arc related to person-centered planning, decision-making, housing options, financial planning, and more!
For families who are planning for the future, what are some of the biggest challenges they face?
Thinking about your family member’s future after you are gone is hard for most caregivers. For the parents of people with IDD, the topic can be so daunting that it can feel impossible to broach. The result? Families all over the country delay this conversation as long as possible and sometimes until one is in a crisis situation.
Many barriers exist that can discourage people with IDD and families from future planning, including:
- Lack of Information or difficulty accessing resources that are easy to understand.
- Difficulty addressing emotional issues related to caregiver’s mortality
- Unavailability of appropriate services and state wait lists
- Difficulty of affording services of attorneys and other professionals
What is the first steps a family should take in the planning process?
Mapping a secure and independent future for loved ones with disabilities is both necessary and possible. It’s an ongoing process that can be done step by step over time – just like financial and life planning for anyone else.
Creating a future plan looks different for everyone, but here are some questions to consider as you are starting these conversations:
- Does the person want to live in a group home? On their own? With a sibling or other family member? How much support do they need to achieve the most independence possible?
- What do they like to do in their free time? What support do they need to do those activities?
- What public benefits are they currently receiving? Are they covered under insurance policies or trusts? Do they have a job or savings, or will they in the future?
What tool or resource would you highlight to help families?
The Arc’s Center for Future Planning website provides a great overview on what to include in a future plan and important issues to consider.
Some sections of the website that I would like to highlight include:
- The Future Planning 101 section is a good place to get started and learn about the importance of a plan.
- The Who Are You? section provides an overview of people’s roles on the future planning team.
- The Where to Start? section provides an overview of the elements to address and include in a plan.
- Finally, Build Your Plan is a free tool available for people to set-up an account and actually create the plan. It takes about 1-2 hours to go through each area of the Build Your Plan tool (6 total).
Do you have any advice or words of wisdom for adults with IDD and their families who are starting to have these conversations?
It’s never too early to start these conversations. I know life is busy and we get focused in the day-to-day of our loved one’s life, but the COVID-19 pandemic has been a stark reminder that planning can’t wait. The hard truth is that reactive instead of proactive planning means that people and their families have little to no control over the supports and life choices available to people with disabilities in emergencies.
In addition to reviewing The Arc’s Center for Future Planning website, I recommend reaching out to a chapter of The Arc to get help with navigating the state and local services available. If you don’t live near a state or local chapter of The Arc, you can visit our resource directory to find a Protection and Advocacy Agency or State DD Agency for help. They might also be able to help you find other professionals such as lawyers and financial planners that may play a role with certain aspects of future planning.
If you read this entire blog, I want you to feel proud of yourself for taking time to learn more about how you can better plan for the future. This is an ongoing process and it’s important to ask for help and be patient and kind to yourself.