Impact feature issue on Retirement & Aging for People with Intellectual, Developmental, and Other Disabilities

Established in 2014, The Arc’s Center for Future Planning supports and encourages people with intellectual and developmental disabilities (IDD) and their families 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 on the Center’s website are free and a great way to learn more about what should be included in a future plan. Resources include a variety of plain language materials, videos, and archived webinars, many of which are also available in Spanish.

Who is The Arc?

The Arc was founded more than 70 years ago by parents who wanted to see their children with IDD live, learn, and work as members of their communities, rather than confining them to institutions. With the grassroots support of people with IDD, parents, siblings, professionals, and other members of the public, The Arc has grown into one of the largest providers and advocates for people with IDD in the country. The Arc has nearly 600 chapters providing residential supports, employment services, recreation opportunities, individual and systemic advocacy, and many other services and supports to more than 1 million people with IDD and their families each year. The mission of The Arc is to promote and protect the human rights of people with IDD and actively support their full inclusion and participation in the community throughout their lifetimes.

Why the Center for Future Planning?

While many people with IDD were once confined to institutions, the vast majority today live in the community. About 75% of adults with IDD live with their parents or other caregivers, and nearly 1 million adults with IDD live with a caregiver who is age 60 or older. More than 50% of caregivers are between the ages of 51 and 79.

According to the 2017 Family and Individual Needs for Disability Supports (FINDS) survey, conducted by The Arc in collaboration with the University of Minnesota, 52% of caregivers spend at least 40 hours a week supporting their family member with IDD - nearly double what caregivers supporting aging parents or a sick spouse report. Half reported being very or extremely stressed, and 95% reported they had to cut work hours, quit jobs, or turn down promotions. The survey found that caregivers have concerns about their family member’s future, including:

• The quality of support will go down (88.7%)
• They will not have friends (77.9%)
• No one else will provide support (77.5%)
• They will have to live somewhere they do not want to live (75.6%)
• Their health will deteriorate (73.7%)
• Abuse or neglect will occur (73.0%)
• Financial exploitation may occur (61.6%)

Many of these concerns can be addressed through a future plan, but more than half of these families don't have one. Twelve percent of families have taken no steps at all, and 39% cite lack of information as the greatest barrier to planning.

Without a plan, people with IDD may experience additional trauma when a caregiver dies. They may need a crisis placement, and other family members (often siblings) may need to quickly learn how to provide care. If the person with IDD is receiving public benefits, these can be lost if a caregiver leaves money directly to the person with IDD or if the person with IDD must move to a different state to be close to remaining family members. Important connections and routines may be lost as well, causing the person with IDD additional stress.

Challenges to Planning for the Future

Thinking about the future after a caregiver is gone is hard for most people. For parents of people with IDD, the topic can be so daunting that it can feel impossible to begin. The result? Families delay this conversation for as long as possible, sometimes until there is a crisis situation.

Many barriers exist that can discourage people with IDD and their 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
• Mistrust of government-funded disability services systems
• Difficulty of affording services of attorneys and other professionals
• Better information on future planning must reach more people with IDD, parents, siblings, and the professionals who can help them plan to show families that planning is necessary and possible. Resources and services must also meet the variety of needs and experiences of families from different cultural, economic, ethnic, and other backgrounds.

What Does the Center do?

The Center for Future Planning creates resources, conducts trainings, and provides information and referral services for people with IDD, their families, and the professionals who support them. In addition to providing online resources, staff members or other experts in the field present quarterly webinars and online and in-person training for professionals to empower them to include future planning in their existing work with families. Through partnerships, conference presentations, emails, and social media, staff members seek to disseminate information about future planning as widely as possible. More than 4,000 Build Your Plan accounts have been created through this free tool, nearly 550 professionals have been trained on supporting families to create a future plan, more than 16,000 people have attended one of the Center’s quarterly webinars, and nearly 100,000 people have visited the Center’s website. Through emails and social media, the Center has shared resources with more than 1 million people and their families.

Getting Started

Mapping a secure and independent future for loved ones with disabilities is both necessary and possible. It’s an ongoing process that should be done step by step over time. Creating a future plan looks different for everyone, but here are some questions to consider as you start these conversations:

• What public benefits does the person currently receive? Are they covered under insurance policies? Do they have a job or savings, or will they in the future? Do they have or need an ABLE account or special needs trust?
• Where does the person want to live? On their own? With a sibling or other family member? In a group home? How much support do they need to achieve the most independence possible?
• Does the person work? What do they want to do in the future? What do they like to do in their free time? Who do they like to spend time with? What support do they need to continue these activities?

The Center’s website provides a great overview on what to include in a future plan and important issues to consider.

• 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 or their families to set up an account where they can create, update, and collaborate on a plan. It takes one to two hours to go through each of the six areas of the Build Your Plan tool.

The COVID-19 pandemic has been a stark reminder that planning can’t wait.

It’s never too early to start these conversations. Life is busy and families often need to focus on the day-to-day care of their loved one, 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 them in emergencies.

Finally, please review the resources on the Center’s website , reach out to your local or state chapter of The Arc for help navigating services in your area, or visit the Center’s resource directory to find advocacy programs, state resources, lawyers, and financial planners.

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Future Planning

Planning for the future is possible and necessary in order to live the life you want. This video steps people with disabilities through the steps of planning the next stage of life.