Living with an Adult Sibling with a Disability
“Growing up with my
sister has taught me
invaluable lessons. My
patience, acceptance,
and outlook on life is due
to her presence. The
least I can do in return is
involve myself in her
future plans and
advocate for a quality
life.”
-Kelsey, a sister to
Katelyn (pictured left in
picture)
Having a Sibling with a
Disability
Sibling relationships are unique
regardless of whether a
disability is present. These
relationships may or may not
form into long and lasting
relationships, again regardless
of whether a sibling has a
disability. The same factors that
may affect any sibling
relationship can also affect
relationships with siblings with
disabilities. Sometimes,
however, having a sibling with a
disability can present unique
and new challenges that
otherwise you would not
experience. Having a sibling
with a disability can have a
profound and positive effect on
an individual’s well-being, social
relationships, and overall view
on life.
Nearly one third of
families in the
United States (more
than 20 million)
have at least one
family member with
a disability.2
How do Siblings feel?
According to a national survey from
the American Association on
Intellectual and Developmental
Disabilities, siblings of adults with
disabilities are doing relatively well,
according to their own self-report.
Most of the participants of the survey
reported that they benefited
psychologically from their sibling
relationship and that they truly
enjoyed having a close relationship
with their brother or sister.
Additionally, this survey found that
siblings of individuals with disabilities
were in good or excellent health and
not depressed.4
The number of adults
with intellectual or
development
disabilities age 60 or
over who live in the
community is
estimated to double to
1.2 million by 2030.1
This is not the whole picture, however.
Siblings are often overcome with
concerns and responsibilities related
to the care and support for their
sibling with a disability.
COMMON CONCERNS: 3
 Personal costs: financial, time, relations with spouse/partner
 Dividing responsibility among family
 Death of parents: worry about future responsibilities
 Their own death
 Availability of services (housing, benefits, recreation, respite,
transportation)
 Sibling health, safety, and happiness
 Making sure sibling voices are heard
 Helping from a distance
Katelyn, hugging her sister Emily on
her wedding day.
Books
What can you do?
Plan for the future!
Thicker Than Water:
Essays by Adult Siblings
of People with
Disabilities
By: Don Meyer
Special Siblings: Growing
Up With Someone with a
Disability
By: Mary McHugh
Being the Other One:
Growing Up with a
Brother or Sister Who Has
Special Needs
By: Kate Strohm
With individuals living longer,
adults with disabilities are
beginning to outlive their
parents. When parents can no
longer provide the necessary
support, the adult siblings often
assume the responsibility. Even
though this is the common
situation that plays out, parents
are hesitant to involve children
without disabilities in future
planning for the individual with a
disability.3
Why is it important to
plan now?
Three quarters of primary
caregivers report that caring for
their sibling is a full-time job, and
30% say they don’t receive
emotional, physical, or financial
help from other friends and
family.5
Six in ten siblings wish they knew
more about how to plan for their
sibling’s future including their
care, finances, and the cost of
caring for their brother or sister.5
What to talk about:
 Residential Plans
 Future Caregiver
 Legal Guardianship
 Letter of intent
 Financial planning
o Estate Planning
Always
discuss your
plans with
your sibling!
LOCAL RESOURCES
NATIONAL RESOURCES
ACHIEVA
www.achieva.info
Sibling Support Project
The Sibling Support Project is a national organization
committed to supporting siblings of individuals with special
health, developmental, and mental health needs. The Sibling
Support Project hosts online communities for young siblings,
teen siblings, and adult siblings.
www.siblingsupport.org
An organization providing comprehensive services and
supports for people with disabilities and their families.
The organization includes advocacy, training,
education, trust services, or other services to the
Greater Pittsburgh Area.
711 Bingham Street Pittsburgh, PA 15203
(412) 995-5000
Family Services of Western PA
www.fswp.org
Family services aim to assist individuals in living the most
productive lives possible while benefiting their home
communities. Provides programs for people with
disabilities, including outpatient services, adult living
education, crisis intervention, family counseling,
financial counseling, vocational and psychosocial
rehabilitation, and volunteer-based supports for older
adults.
6401 Penn Ave # 2, Pittsburgh
(412) 661-1681
Easter Seals Western Pennsylvania
www.westernpa.easterseals.com
2525 Railroad Street
Pittsburgh, PA 15222-4608
412-281-7244
800-587-3257 toll free
SibNet Listserv – For Adult Siblings
A place for adult brothers and sisters of individuals with special
health, developmental, and emotional needs to share
information and discuss everyday issues.
http://www.siblingsupport.org/connect/the-sibnet-listserv
Sibling Leadership Network
A national organization providing siblings information and
support to help and advocate alongside their brothers and
sisters.
www.siblingleadership.org
SpecialCareSM Program
This is a program, developed by MassMutual, that provides
useful information for individuals caring for a person with a
disability or other special needs. It is an outreach initiative
that can help ensure proper life care planning for the future of
your sibling.
Telephone: 1 (800) 272-2216
www.massmutual.com/specialcare
1 Coyle,
C.E., Mutchler, J. & Kramer, J. Fact Sheet: Sibling Caregivers of Aging Adults with Intellectual Disabilities, UMASS Boston.
Funders Network Website (2009), Disability Stats and Facts.
3 Heller, T., & Caldwell, J. (2006). Supporting Aging Caregivers and Adults with Developmental Disabilities in Future Planning. Mental Retardation, 44(3), 189-202.
4 Hodapp, R.M., Urbano, R.C., & Burke, M.M. (2010). Adult female and male siblings of persons with disabilities: Findings from a national survey. Intellectual and
Developmental Disabilities, 48, 52-62.
5 Mass Mutual & Easter Seals: Sibling Disability Study(2012). Ipsos Public Affairs: The Social Research and Corporate Reputation Specialists.
2 Disability