Online Resources for Adult Sibs:
SibNet is the largest and oldest listserv for adult sisters and brothers of people with special developmental needs. The original group still exists, and in 2009, SibNet also became a Facebook group. SibNet is hosted by the Sibling Support Project and the Sibling Leadership Network.
Quality Mall is a place where you can find lots of free information about person-centered supports for people with intellectual/developmental disabilities. Each of the Mall stores has departments you can look through to learn about positive practices that help people with intellectual/developmental disabilities live, work and participate in our communities and improve the quality of their supports.
The SLN manages the Quality Mall Sibling department! Check it out here!
The Arc’s Center for Future Planning
There are 600,000-700,000 families in the United States in which an adult with an intellectual or developmental disability (I/DD) is living with aging family members and there is no plan for the individual’s future. The Arc has created the Center for Future Planning to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center’s website (futureplanning.thearc.org) is the first step in achieving that goal.
The website provides reliable information and practical assistance to families and individuals with I/DD on areas such as person-centered planning, decision-making, housing options, financial planning, establishing daily activities, and making social connections. In addition, the website provides information to family members, friends, and professionals that support individuals with I/DD. The website also features stories of people and families who have created future plans or who are in the planning process.
The Center also offers webinars to chapters of The Arc and other professionals who support people with I/DD to help them learn how to assist families in the future planning process. If you know of a group in your own community that would be interested in these trainings, please encourage them to visit futureplanning.thearc.org to spread the word!
Please contact email@example.com to learn more about the Center’s plans to develop more resources and training opportunities.
The New York State Developmental Disabilities Planning Council (NYSDDPC) has funded a project being led by the Yang-Tan Institute on Employment and Disability at Cornell University, in partnership with the Sibling Leadership Network (SLN) and sibsNY.
Through this collaboration, a website has been launched that is dedicated to issues concerning siblings of individuals with disabilities. To ensure that you receive additional information and updates about the website, online educational materials and innovative training opportunities, please join visit SiblingResources.org.
COST PER UNIT: $80.00 (Softcover) + Shipping
To order, contact the RRTCADD
The National Down Syndrome Congress created an Adult Sibling Toolkit that can be access in both English and Spanish.
Managing Someone Else’s Money
The Consumer Finance Protection Bureau offers the Managing Someone Else’s Money series. Four easy-to-understand guides help financial caregivers understand their duties, watch for scams and exploitation, and learn where to turn for help. Separate guides are available (in PDF) for powers of attorney, court-appointed guardians, trustees, and government fiduciaries such as Social Security representative payees and Veterans Affairs fiduciaries.
Financial Steps for Caregivers
The Women’s Institute for a Secure Retirement (WISER) and the National Resource Center on Women and Retirement Planning have released a new publication, Financial Steps for Caregivers: What You Need to Know About Protecting Your Money and Retirement (PDF). The 26-page guide is designed to help identify financial decisions caregivers may face as they care for family members. Sections cover budgeting, saving for retirement, personal care agreements, identifying financial fraud and abuse, sources of financial help for caregivers and care recipients, end-of-life planning, and more. The publication was developed with funding from the Administration on Aging, now part of the Administration for Community Living at the US Department of Health and Human Services.
“After the Diagnosis” free eBook
Caregiving.com created a free eBook called “After the Diagnosis.” The resource helps individuals with a family member recently diagnosed with a chronic condition or debilitating injury. The booklet, co-authored with two family caregivers, offers tips on coping with a diagnosis, getting organized and navigating the health care system.
Click here to download the eBook. Click on the button to buy at the bottom and the ebook will be emailed to you for free.
Self-Determination, Empowerment and Informed Decision Making
SLN Board member Barb Sapharas has created this Self-Determination Handout that outlines strategies that self-advocates can use in seeking support.
Chapters Ahead, Inc. is a nonprofit organization providing training, consultation, and a variety of materials to promote lifetime learning, social interaction, and full community participation for individuals with intellectual and developmental disabilities. We are particularly interested in developing practical strategies and solutions that allow persons with disabilities to become valued and productive members of the community. Chapters Ahead grew from our experience developing and disseminating the Next Chapter Book Club, an internationally recognized literacy program for adolescents and adults with disabilities.
The National Down Syndrome Society has some great resources regarding Down syndrome and aging:
http://www.ndss.org/Resources/Publications/Printed-Materials/ (Click on “Aging and Down Syndrome: A Health and Well-being Guidebook”)
Sibling Survival Guide
Edited by Don Meyer & Emily Holl
The Sibling Survival Guide focuses on the topmost concerns identified by siblings from across the country. Experienced siblings and service providers offer practical information and personal anecdotes on being a sibling of a person with a disability.
Buy the book. All royalties support the SLN.
Death & End of Life Care
Last Passages Project. The purpose of the project is to share information and promising practices to enhance end of life care for persons with developmental disabilities. Last Passages is a joint project of the Volunteers of America, the University at Albany, NYSARC, Inc. and Marist College. End-of-Life Care: A guide for supporting older people with intellectual disabilities and their families (Published 2000, NYSARC, Inc) can be downloaded here at no cost.
Thinking Ahead: My Way, My Choice, My Life at the End. (2009). A workbook and DVD for people with DD. California Department of Developmental Services. This is a consumer friendly workbook to assist people in making decisions about the end of their life. This workbook and DVD were funded by a 2006-07 DDS Wellness grant. The workbook can be downloaded here at no cost. This resource is available in English, Spanish, and Chinese.
People Planning Ahead: A Guide to Communicating Health Care and End of Life Wishes (2009). by Leigh Ann Kingsbury, AAIDD. People Planning Ahead provides a comprehensive and structured way to ensure that loved ones receive care respecting their wishes and conforming to their personal, cultural, and religious beliefs during times of chronic and terminal illness, or severe disability. Accompanying CD-ROM contains electronic forms from Manual. For more information, click here.
American Bar Association Commission on Law and Aging has three good resources on health care advance planning.
Van Dyke, L. (2003). Lessons in Death and Grief: Supporting People with Developmental Disabilities in the Healing Process, Homewood, IL: High Tide Press. Order here.
Easter Seals has provided important resources about estate planning. These tools will help ensure that you have an understanding of aspects of estate planning including living wills and power of attorney.
Grief & Loss
The following list of resources on grief and loss related to siblings can be found through the Sibling Support Project’s Amazon Astore website. Items can be found simply by clicking here.
- Sibling Grief: Healing After the Death of a Sister or Brother By Pleasant White
- Surviving the Death of a Sibling: Living Through Grief When an Adult Brother or Sister Dies By T.J. Wray
- The Empty Room: Understanding Sibling Loss By Elizabeth DeVita-Raeburn
Healing the Adult Sibling’s Grieving Heart: 100 Practical Ideas After Your Brother or Sister Dies (Healing Your Grieving Heart Series) By Alan D. Wolfelt PhD
Sibling Loss By Joanna H. Fanos
- Adult Sibling Loss: Stories, Reflections and Ripples (Death, Value and Meaning) By Brenda J. Marshall
- When a Brother or Sister Dies: Looking Back, Moving Forward By Claire Berman
- Death of a Sibling: five sisters, five stories: An article from Pediatric Nursing By Marcia Van Riper
The following resources on grief and loss related to siblings can be found on the Quality Mall website. Simply click the links below.
- Understanding Death and Illness and What They Teach About Life: An Interactive Guide for Individuals with Autism or Asperger’s and their Loved Ones
- Lessons in Grief and Death: Supporting People with Developmental Disabilities in the Healing Process
- Person Centered Planning for Later Life: Death and Dying – A curriculum for Adults with Mental Retardation
- A Good Death Guides
The Special Needs Alliance (SNA) is a nonprofit comprised of attorneys who have guided thousands of families through the process of planning for a loved one’s long-term well-being. Many SNA members have children or siblings with disabilities, adding a personal perspective to their legal insights.
A special needs trust can be a very powerful aid in managing care for a family member with a disability. It can provide supplemental items like therapy, respite care, dental work, companions, entertainment, education — all without interfering with the beneficiary’s SSI, Medicaid or other government programs. The special needs trust can be a flexible tool. It can also be very difficult and confusing to administer.
Have you been named as trustee of a special needs trust? Have you created a special needs trust, and wonder what the job of trustee is actually like? Are you a trust beneficiary, trying to figure out what the trustee is permitted — and required — to do? The Special Needs Alliance is pleased to offer its free booklet on administering special needs trusts. In plain English, it can help you understand the choices and obligations.
Community-based programs for adult sibs:
Search self-help groups nationwide at the American Self-Help Groups Clearinghouse.