The Arc to Launch New National Resource Center for Future Planning

The Arc is pleased to announce it has been awarded $800,000 over two years by the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with I/DD is living with aging family members and there is no plan for the individual’s future.  The Center will empower aging caregivers to plan for the future of their adult son or daughter with I/DD, providing families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports.

“There is a silent crisis facing our country that desperately needs a solution – what happens when there is no plan for how an individual with an intellectual or developmental disability will live life to the fullest when the loved one they live with is no longer with them?  In the last twenty years, people with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan, and The Arc is seeking to provide help to families and people with disabilities looking for that roadmap,” said Peter Berns, CEO of The Arc.

The Arc’s new Center for Future Planning will have a robust online presence, with an interactive and user-friendly website geared toward older learners, with extensive, vetted content.  The website will include a database of sources for local-and state-based information, people, and related organizations, and a searchable provider database.  The Arc will also operate a telephone and online information and referral system, connecting people to help in their communities.

Chapters of The Arc will play a critical role in this Center, as they will be able to access best practice protocols when providing future planning resources in their local communities.  The Center will also feature a National Pooled Special Needs Trust, develop protocols and business infrastructure to provide private trust companies with outsource assistance in servicing existing and future beneficiaries under individual special needs trusts, create training and networking opportunities for families and professionals in the field, and establish a volunteer action network.  This new network will pair self-advocates with volunteers without disabilities to visit people with I/DD in community settings and monitor their satisfaction and quality of life.

“This ambitious project aims to support people with intellectual and developmental disabilities and their families as they face a big transition in their lives.  Families and people with disabilities are seeking out these resources, and just as The Arc has done for last sixty years of this movement, we are innovating to be a leading resource into the future,” said Berns.

2 thoughts on “The Arc to Launch New National Resource Center for Future Planning

  1. This is needed and such great news! I am the author of Opening Doors, Opening Lives: Creating awareness of advocacy, inclusion, and education for our children with special needs. I am a guest lecturer–I provide educational research (that I apply daily as a teacher of 24 years) along with our personal story. Our 10th grade daughter has been fully included in school and life. I want every young family in our Arcs to read my book–because even with The Arc’s overall inclusive philosophy–there are still whispers among families that “inclusion didn’t work” for their child so it really can’t work for all. So children are still routinely being sent to separate schools or separate classrooms for their entire childhoods. Their parents often don’t realize until they are adults that these beautiful people that have been kept separate–must someday survive without them. I hope the partnership between the Arcs can heavily influence educational placement for children because this leads to the most natural progression to what you want–adults and their future plans.

  2. I am very pleased to see a National Center on Future Planning specifically geared toward families with intellectually challenged loved ones. My husband and I are part of the “silent crisis”. Our 39 year old son is living with us and we have no idea what will happen in the next 5 to 10 years. Please include information on how to deal with co-curing mental illness and substance abuse in the intellectually challenged population. It is a real problem which I am certain my family is not the only family who has to deal with this.

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