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| Communication | Caregiving | Advocacy |
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| Think About Your Family
Family involvement is often the backbone
of planning and care. It is important
to think about what your family can
and should be doing in the role of
care provider. While family can provide
many types of support, it may not be
feasible or desirable for parents or
spouses to provide certain types of
support. It is also important to identify
who else in the community should be
part of the planning process or your
support team member. Many older people
are able to remain at home because
their family helps with meals, transportation,
taking medication, personal care, and
more. This type of support is called “family
caregiving.” Family caregivers
may also be neighbors or friends. Many
are employed and are likely responsible
for the needs of other family members.
Family caregivers are often the “go-between” with
health care providers and others for
their loved one.
The amount and type of family involvement
will change over time. Sometimes that
change occurs in an instant due to a
health crisis. Good communication is
vital to keep this family support system
working smoothly.
Think about the following questions
for yourself or your family member:
- Do I expect family members to assist
when I have long-term care needs?
- Does my family or support team
have the resources it needs to take
care of my needs?
- Have I talked with my family or
support team to determine the amount
and type of support they are willing
to provide?
- What other resources will they
require to take care of my needs?
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| Communication | Caregiving | Advocacy |
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| Communication
American
Health Care Association
Includes "A
Guide for Families – Having
the Conversation about Long-Term Care" |
Family
Caregiver Alliance, National Center
on Caregiving
Includes "Holding
a Family Meeting" |
Family Village Coffee Shop
Includes information to help persons with disabilities and family members to make connections with each other |
Family Village Post Office
Online discussion forum for many disability issues |
National
Dissemination Center for Children
with Disabilities
Central source
of information about children with
special needs for parents, family members,
and professionals |
National
Family Caregivers Association and
National Alliance for Caregiving
Includes "Family
Caregiving 101 – Communicating
Effectively in the Hospital Setting" |
Parent
to Parent USA
Connects families of
children with special needs and the
professionals who serve them |
University
of Kansas, Beach Center on Disability
Real
stories and tips |
University
of Minnesota
Includes "Talking With Your
Health Care Provider: A Guide" |
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| Caregiving |
AARP
Includes "Caring
for Parents and Finding Help" |
AARP
Information for grandparents raising grandchildren |
Family
Caregiver Alliance National Center
on Caregiving
|
Iowa
Association of Area Agencies on Aging,
Iowa Family Caregiver Support Program
Includes "Answers
on Aging" |
National
Alzheimer’s Association
Includes
information on planning ahead, care
options, coordinating care, support
and resources |
U.S.
Department of Health and Human Services,
Administration on Aging
Includes "Because
We Care: A Guide for People Who Care" (pdf,
75 pages) |
U.S.
National Institutes of Health, National
Institute on Aging
Alzheimer’s
disease education and referral center |
U.S.
National Institutes of Health, National
Institute on Aging
Includes "Long-Distance
Caregiving" |
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| Advocacy |
AARP
If
nursing home problems occur, how to
solve problems |
Arc
of Iowa
More than 30 local offices
to provide support for Iowa children
and adults with mental retardation
and related developmental disabilities |
ASK
Family Resource Center
A "one-stop
shop" for children
and adults with disabilities and their
families |
Disability Resources.org
Advocacy information for persons with disabilities |
Family
Caregiver Alliance, National Center
on Caregiving
Includes "Advocacy
Tips for Caregivers" |
Family
Voices Iowa
A grassroots clearinghouse
providing information and education
about the health care of children with
special health needs |
Iowa Attorney General's Office
Information to protect consumers |
Iowa
Department of Elder Affairs, Office
of the State Long-Term Care Ombudsman
Trained
advocates for residents of long-term
care facilities |
Iowa
Department of Human Rights, Community
Action Agencies
Contact information
to tap resources to improve the quality
of life for low-income, elderly and
disabled Iowans (pdf, 1 page) |
Iowa
Governor’s Developmental Disabilities
Council
References
from the governor's council |
Iowa
Protection and Advocacy Services,
Inc.
Support for persons with disabilities
to secure their rights and full participation
as citizens |
National Caregivers Library
Online library for caregivers |
National
Council on Independent Living
Advancing
independant living and the rights
of people with disabilities through
consumer-driven advocacy |
Olmstead
Real Choices for Iowa
Information
related to the Olmstead Act and how
it affects Iowans |
Operation
Restore Trust of Iowa, The Power
of One
Report concerns about potential
fraud and abuse of Medicare or Medicaid,
request information or a speaker, learn
how to prevent scams and read how others
have saved Iowans millions of dollars |
Parent
Training and Information Center of
Iowa
A focus on the educational
needs of children with disabilities, particularly
underserved or inappropriately identified
children |
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