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------------------------------------- VOR Weekly E-Mail Update July 27, 2007 -------------------------------------- ======================================================== Contents
FOCUS ON SIBLINGS and LIFE/ESTATE PLANNING
1. Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning – newly released research
2. “Future Life and Estate Planning for Persons with Developmental Disabilities,” a VOR publication
3. GET GUARDIANSHIP
======================================================== ------------------------------------------------------------------------------------------------------------------------------------------- 1. Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning – newly released research ------------------------------------------------------------------------------------------------------------------------------------------- The Institute on Disability and Human Development recently released an Disability Research Brief, titled, “Involvement of Adult Siblings of People with Developmental Disabilities in Future Planning.”
The study notes that “Adult siblings of people with developmental disabilities are the most likely people to be involved in the future as parents age and can no longer provide care. Yet many parents are reluctant to involve their children with or without disabilities in future planning (Heller & Caldwell, 2006).”
Regarding “Sibling Involvement in Future Planning,” the 139 siblings who responded to a survey were predominately sisters (93%) who were highly educated (76%) with most (70%) living within an hour of their brother or sister with a disability. Yet, few families in this study made residential (32%), guardianship (39%), or financial plans (44%) or created a letter of intent, a non-legally binding planning document (44%). Only 32% of families had identified a future caregiver. Siblings who were most involved were those who were older and were already involved in disability related activities.
The research brief also covers “Sibling Expectations of Being Future Primary Caregivers,” “Concerns of Siblings for the Future,” and “Implications for Policy and Practice.”
To read the entire brief, visit, http://www.uic.edu/orgs/idhd/files/Briefs/SibsFuturePlanning.pdf
------------------------------------------------------------------------------------------------------------------------------------------- 2. “Future Life and Estate Planning for Persons with Developmental Disabilities,” a VOR publication ------------------------------------------------------------------------------------------------------------------------------------------- VOR’s 2004 publication, “Future Life and Estate Planning for Persons with Developmental Disabilities” is available online. Guardians, Special Needs Trusts, Wills, etc., are covered in this comprehensive publication.
Visit: http://vor.net/guardianship.htm
-------------------------------------- 3. GET GUARDIANSHIP ------------------------------------- Some people with mental retardation need help making some or all of their life’s decisions, including those that arise daily. A court will decide whether full or limited guardianship (also called “conservatorship” in some states) is needed and will approve the individual who has stepped forward to fill this role. In most cases, the guardian that is court-appointed will be a family member. Some state statutes even indicate a preference for family members as guardians because family members typically have a lifelong connection with the individual and can best ascertain the individual’s wishes and best interests.
It is important to note that your status as a parent or sibling or other relation is NOT the same as being a legally-appointed guardian. Once the individual with a cognitive disability, no matter how severe, reaches adulthood (18 or 21, depending on the state), they are presumed by law to be competent until a court rules otherwise and declares that the individual needs a guardian. A familial relationship, whether you are a parent, sibling, cousin, aunt or uncle, is not enough to guarantee your input will be regarded for even the most critical of life’s decisions (medical, housing, finances, etc.) Guardianship is essential if you want a place at the table.
IMPORTANT NOTE: Once an individual reaches adulthood, the individual’s eligibility for public benefits relates solely to his/her personal income and assets. A guardian will never be held liable for the cost of that individual’s care, no matter the personal wealth of the guardian.
------------------------------------------------------------------------------------------------- Tamie Hopp
REFERRAL/MEMBERSHIP/CONTRIBUTION FORM
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