Intersections of Disability and Rurality: Elevating Family Voices

In this recorded webinar, you will hear from Jessica Curd about rural caregiving and disability. She talks about how poverty, living in rural areas, caregiving, and having a disability can overlap and create higher risks and vulnerability. She also talks about a study she did with Dr. John Keesler. They listened to families in rural areas with kids with autism and let them share their experiences. Jessica explains how they did the study and what they found. She also talks about ideas from the families for how to help more.

Download the presentation here.

FINDS Community Report 2023: Family & Individual Needs for Disability Supports

The Family and Individual Needs for Disability Supports (FINDS) survey provides insights and understanding of the experiences of families supporting a family member with intellectual and developmental disabilities (IDD). It is critical research to inform better policy development.

The FINDS survey was initially conducted by The Arc of the United States in 2010. It was updated in 2017 through a collaboration between the Research and Training Center on Community Living (RTC/CL) at the University of Minnesota and The Arc.

The 2023 report focused on:

  1. What are the challenges families face in meeting the support needs of their family members?
  2. What are the economic implications of caregiving?
  3. How does caregiving affect caregivers, and what supports do they need?

A better understanding of the experiences and needs of caregivers can help policymakers and others support caregivers in this critical role.

How Death Affects the Money Left in ABLE Accounts and Special Needs Trusts

In this video, you will learn what happens to the money in an ABLE or Special Needs Trust account when the person with a disability who has the account dies. We explain the rules that Medicaid has about what happens and what you should know when you set up the account.

This video is also available in Spanish.

Pooled Special Needs Trusts

What is a pooled special needs trust, and why should you consider one? Watch this video to learn more about how they work. You can access the video slides here.

This video is also available in Spanish.

Special Needs Trusts and ABLE Accounts: How Are They Different?

Understand both special needs trusts and ABLE accounts so you can decide which options are right for your family. You can access the video slides here.

This video is also available in Spanish.

An Overview of Special Needs Trusts

People with disabilities and families can use special needs trusts to save for the future. Watch this video to learn more about how they work. You can access the video slides here.

This video is also available in Spanish.

An Overview of ABLE Accounts

ABLE accounts are one way for people with disabilities to save money and not lose their public benefits. Learn more about them in this video. You can access the video slides here.

This video is also available in Spanish.

Future Financial Planning for People with Disabilities: A National Study on What’s Working and What’s Not

For many people with disabilities and their families, future financial planning is overwhelming and unnecessarily challenging. They sometimes struggle to navigate complex and siloed systems to find professionals who have the knowledge and experience needed to help them secure their finances, benefits, and futures. During this session, we will share the results of a national study of more than 4,000 people with disabilities, their families, and professionals in related fields. We will present what we learned about people’s experiences and some challenges related to future financial planning, as well as solutions that help their planning efforts. Attendees will gain expert recommendations and strategies to help ensure that people with disabilities and their families have access to the services and resources they need to plan for their financial futures.

Access the transcript here and session slides here.

See additional future planning resources here.

#FreeBritney: Lessons for People With Intellectual and Developmental Disabilities and Their Families

Britney Spears’ public battle over her conservatorship is shining a light on some of the broader challenges that people with disabilities face under guardianship, which is a term some states use for that kind of court involvement. This webinar describes some of the issues being highlighted in the media from Ms. Spears’ case, how they might apply to people with IDD, and alternative approaches that individuals with IDD and their families might consider.

Webinar slides

Webinar transcript

Pooled Trusts Operated by Chapters of The Arc

Many chapters nationwide offer pooled special needs trusts to help people with disabilities pay for the things they want and need in their life while protecting their public benefits.

Pooled special needs trusts are run by non-profit organizations, like chapters of The Arc. Individual accounts are established for each beneficiary, but the accounts are pooled together for investment purposes. Beneficiaries or a designated representative make requests to use the trust money. The pooled trust manager will decide whether to approve the request. The pooled trust manager is responsible for complying with federal and state laws regarding special needs trusts.

Pooled trusts are often more affordable than individual special needs trusts and offer consistency for the beneficiary.

This database can help you find a chapter of The Arc near you that runs a pooled trust.