Family Centered Care Self Assessment Tool
T
ool
FAMILY-CENTERED CARE
y
SELF-ASSESSMENT TOOL
amil
Developed by
F
…keeping families at the center
of children’s health care
with funding from
Maternal and Child Health Bureau (MCHB), Health Resources and
Services Administration, U.S. Department of Health and Human
Services under Cooperative Agreement #U40MC00149-09-00
OCTOBER 2008
I N T R O D U C T I O N
P U R P O S E O F T H E
Health care visits for children, youth and their
FA M I LY- C E N T E R E D C A R E
families can be more than getting shots, having ears
S E L F - A S S E S S M E N T T O O L
examined or treating the physical symptoms of an
Family-centered care is a key aspect of quality in
illness. Each visit is an opportunity for families,
health care for children, youth and their families.
youth and health care providers to partner to assure
This tool is designed to:
quality health care for the child and to support the
family’s needs in raising their child. This enhanced
1. Increase outpatient health care settings’ and
aspect of the family and health care provider
families’ awareness about the implementation of
relationship is called family-centered care. The
family-centered care and,
foundation of family-centered care is the partnership
2. Provide an organized way for health care settings
between families and professionals. Key to this
to assess current areas of strength and identify
partnership are the following:
areas for growth, plan future efforts and to
track progress.
• Families and professionals work together in the
best interest of the child and the family.
This tool is not designed to provide a score but is
• As the child grows, s/he assumes a
meant as an opportunity for reflection and quality
partnership role.
improvement activities related to family-centered
• There is mutual respect for the skills and
care within outpatient health care practices. It can
expertise each partner brings to the relationship.
also be used by families to assess their own skills and
• Trust is fundamental.
strengths, the care their children and youth receive,
• Communication and information sharing are
and to engage in discussions within health care
open and objective.
settings and with policy makers in organizations,
• Participants make decisions together.
health plans and community and state agencies about
• There is a willingness to negotiate.
ways to improve health care services and supports.
The tool is intended to assess care for all children
Within that framework, ten components of family-
and youth and also has some questions that are
centered care have been identified. (National Center
specific to the needs of children and youth with
for Family-Centered Care (1989); Bishop, Woll and
special health care needs and their families.
Arango (1993)) Family-centered care accomplishes
Questions on the tool address the ten components of
the following:
family-centered care and the key aspects of
family/youth/provider partnerships.
1. Acknowledges the family as the constant
in a child’s life.
2. Builds on family strengths.
3. Supports the child in learning about
and participating in his/her care and
decision-making.
4. Honors cultural diversity and family traditions.
5. Recognizes the importance of community-
based services.
6. Promotes an individual and
developmental approach.
7. Encourages family-to-family and
peer support.
8. Supports youth as they transition
to adulthood.
9. Develops policies, practices, and systems
that are family-friendly and family-centered
in all settings.
10. Celebrates successes.
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FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
D E S C R I P T I O N O F T H E
D E F I N I T I O N S O F T E R M S
FA M I LY- C E N T E R E D C A R E
Alternative Healing is the use of herbs,
S E L F - A S S E S S M E N T T O O L
aromatherapy, acupuncture, massage and other
remedies that are not considered part of conventional
The tool is divided into three major sections:
(Western) healthcare treatments.
1) Family/Provider Partnership, 2) Care Setting
Practices and Policies and 3) Community Systems of
http://www.aap.org/healthtopics/complementarymedicine.cfm
Services and Supports. Within each major section,
Care Setting is the physical location where a family
there are several subtopics that address family-
and child/youth receives outpatient health services.
centered care.
These services can be provided by a pediatrician,
other physician, physician’s assistant, nurse, social
worker, care coordinator, or any other staff person at
Sections and Subtopics of the
this setting.
Family-Centered Care Self-Assessment Tool
Children and Youth with Special Health Care Needs
Family/Provider Partnership
have or are at increased risk for chronic physical,
• The decision-making team
developmental, behavioral, or emotional conditions
• Supporting the family as the constant in the
that require health and related services of a type or
child’s life
amount beyond that required by children generally.
• Family-to-family and peer support
McPherson M, Arango P, Fox H, Lauver C, McManus M,
• Supporting transition to adulthood
Newacheck P, Perrin J, Shonkoff J, Strickland B. A new
• Sharing successes
definition of children with special health care needs. Pediatrics,
102(1):137-140, 1998.
Care Setting Practices and Policies
• Giving a diagnosis
Community-based Services are local, non-medical
• Ongoing care and support
services that help children and families accomplish
• Addressing child/youth development
daily activities. These services can range from
• Access to records
school, childcare, after-school activities, family
• Appointment schedules
and peer support and advocacy groups, early
• Feedback on care setting practices
intervention or Head Start (a program that helps
• Care setting policies to support
families learn about and promote the development
family-centered care
of their young children).
• Addressing culture and language in care
Consent is approval for healthcare decisions.
Individual must have legal authority to provide
Community Systems of
consent. Generally, the parents or legal guardians of
Services and Supports
• Information and referral and
minor children (younger than 18 years old) provide
community-based services
consent. For individuals 18 and older who cannot
• Community systems integration and
make their own decisions, a legal guardian or proxy
care coordination
can provide consent.
Cultural Competence requires organizations to have a
defined set of values and principles and demonstrate
Each section contains a series of questions that ask
behaviors, attitudes, policies and structures that enable
about concrete actions that reflect family-centered
them to work effectively cross-culturally. They should:
care. Each section is coded with numbers that
indicate which of the ten elements of family-centered
• Value diversity,
care it addresses.
• Conduct self-assessment,
• Manage the dynamics of difference,
• Acquire and institutionalize cultural knowledge and
• Adapt to diversity and the cultural contexts of the
communities they serve.
FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
iii
Organizations should incorporate the above in all
HIPAA (The Health Insurance Portability and
aspects of policymaking, administration, practice,
Accountability Act). This is a federal law that
service delivery and involve systematically
protects the privacy of personal health information.
consumers, key stakeholders and communities.
You must give permission before personal health
Cultural competence is a developmental process
information can be shared with:
that evolves over an extended period. Both
• Health providers,
individuals and organizations are at various levels
• Hospitals,
of awareness, knowledge and skills along the cultural
• Insurance companies, state and federal agencies,
competence continuum.
• Schools,
(Adapted from Cross et al., 1989) http://www11.georgetown.edu/
• Employers, or
research/gucchd/nccc/foundations/frameworks.html
• Anyone else.
Family—Families are big, small, extended, nuclear,
You also have the right to read your medical record
multi-generational, with one parent, two parents, and
and make corrections. For more information visit:
grandparents. We live under one roof or many. A
http://www.hhs.gov/ocr/hipaa
family can be as temporary as a few weeks, as
permanent as forever. We become part of a family by
Linguistic Competence is the capacity of an
birth, adoption, marriage, or from a desire for mutual
organization and its personnel to communicate
support. As family members, we nurture, protect, and
effectively, and convey information in a manner that
influence each other. Families are dynamic and are
is easily understood by diverse audiences including
cultures unto themselves, with different values and
persons of limited English proficiency, those who
unique ways of realizing dreams. Together, our
have low literacy skills or are not literate, and
families become the source of our rich cultural
individuals with disabilities. Linguistic competency
heritage and spiritual diversity. Each family has
requires organizational and provider capacity to
strengths and qualities that flow from individual
respond effectively to the health literacy needs of
members and from the family as a unit. Our
populations served. The organization must have
families create neighborhoods, communities,
policy, structures, practices, procedures and dedicated
states, and nations.
resources to support this capacity.
Developed and adopted by the New Mexico Legislative Young
Goode & Jones (modified 2004). National Center for Cultural
Children’s Continuum and New Mexico Coalition for Children,
Competence, Georgetown University Center for Child & Human
June 1990.
Development. http://www11.georgetown.edu/research/
gucchd/nccc/foundations/frameworks.html.
Family Supports are services that strengthen and
support the family’s role as caregiver and decision-
Provider—in the context of this tool is any person that
maker on behalf of their children.
provides services within the care setting.
Family-to-Family and Peer Supports are ways to
Transition to Adulthood—The period of time during
bring together families, youth and others who share
which families, youth and providers plan for and
similar life situations so they can share their
develop the process to assure that youth will:
knowledge, concerns, and experiences with
1. Be able to successfully manage all aspects of their
each other.
healthcare and be prepared to take on adult
responsibilities, and ultimately, live as
independently as possible and
2. Continue to receive high quality
healthcare services.
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FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
Directions: Please answer each question by choosing only one answer. It may be difficult to rate some items; just answer
each question based on your knowledge, experiences and opinions. There are no right or wrong answers.
Note: In each question the term “provider” refers to the health care professionals and other staff within your health care setting.
T H E FA M I LY / P R O V I D E R PA RT N E R S H I P
The Decision-Making Team
FCC Components: 1, 2, 4, 9
1. Does your provider:
A. Partner with your family to help you define your role in
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your child’s care?
B. Honor your requests for others (extended family,
community elders, faith leaders or traditional healers that
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are designated by the family) to participate in the process
that leads to decisions about care?
C. Help you advocate for services and work to
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Does Not Apply
improve systems of care, if you so choose?
D. Act to support your family’s chosen role in decision-making?
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2. Do you and your provider:
A. Work together as partners to make health care decisions?
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B. Talk about the range of treatment and care choices for
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your child/youth?
C. Discuss which treatment and care choices would be best for
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your family and child/youth?
D. Decide together what the desired outcomes are
(e.g., improved health status, better school attendance, less
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pain, or better involvement with social activities or sports)?
3. Do choices of diagnostic and treatment approaches take into account:
A. Family and child/youth preferences for site of care, type of
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provider (gender, language spoken, etc.)?
B. Child/youth’s ability to tolerate the procedure?
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C. How it will affect the family’s stress level?
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D. Family insurance status and economic situation?
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E. Family, child/youth work and school schedules?
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4. Does your provider make sure you have the
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information you need to understand the range of
treatment and care choices for your child/youth?
5. Does your provider make sure all your questions
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about your child/youth’s treatment and care have
been answered before you leave the office?
6. Do you feel comfortable letting your provider know
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if/when you disagree with medical advice and
recommendations for treatment and care of your
child/youth?
FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
1
The Decision-Making Team Continued
7. Is there a respectful negotiation process to resolve
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any disagreements you might have about your
child/youth’s treatment and care?
8. Does your partnership with your provider change
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over time as your experiences, knowledge and
skills change?
Supporting the Family as the Constant in the Child’s Life
FCC Components: 1, 2, 4, 10
1. Does your provider ask about:
A. Your family’s well-being (adults and other children) and
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their needs for support?
B. Your support network and the role of faith/religion or other
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cultural supports?
C. Your family’s concerns and any stresses or successes you
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may experience as a caregiver?
D. Depression, domestic violence, substance abuse, housing or
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lack of food in your family?
2. Does your provider offer your family:
A. Information about health and wellness appropriate to
child/youth’s developmental stage? (This includes
information about child development, mental health, healthy
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weight and nutrition, physical activity, sexual development
and sexuality, safety/injury prevention, and oral health.)
B. Opportunities to become more knowledgeable about
promoting your child’s healthy development, such as
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written information, classes, or connect you with other
opportunities in your community?
Family-to-Family and Peer Support
FCC Components: 2, 3, 4, 7, 8, 10
1. Does your provider:
A. Have a process to identify the strengths of families within
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the practice that they can share with other families?
B. Actively assist in linking families and youth to other
families and youth who share similar life situations, for
example, new mothers, children with special health care
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needs and disabilities, youth in transition, single parent
families, grandparents raising grandchildren, etc?
C. Link families in a way that that reflects the cultural and
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language preferences of each family?
D. Help your family/youth make the first connection to support?
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E. Offer opportunities for families/caregivers to learn from
each other about how the role of families changes as their
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children/youth get older?
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FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
F. Offer opportunities for children/youth to learn from other
youth or those somewhat older how to be active in
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decision-making about their own care?
Supporting Transition to Adulthood
FCC Components: 1, 3, 4, 6, 7, 8
1. Does your provider:
A. Discuss your family’s, child’s (from an early age)/youth’s
vision for the future? (For example, take time to discuss
your family and child’s hopes and dreams about education,
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social relationships, meaningful work, development of
independent living skills, and health care.)
B. Respect your family’s cultural beliefs about when a “child’
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is fully adult?
C. Offer opportunities for you and your youth to meet with
older youth and young adults who can be successful role
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models for achieving future goals?
2. In preparation for transition, does your provider:
A. Help your youth learn about: managing his/her health,
dealing with the logistics of care settings, insurance
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and decision-making?
B. Work with your family to assure that your youth
knows about any diagnoses, current treatments and
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Does Not Apply
can discuss those with the care provider?
C. Work with you and your youth to develop a formal
healthcare transition plan by age 14 that documents
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provider, family and youth roles?
D. Have a formal mechanism to identify adult health
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care providers for youth in transition?
E. Have a process to share information with the adult
care provider including: transition plans, medical
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records, key health issues and current family and
youth roles in managing care?
F. Help your youth develop a portable medical
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record to support interactions with providers?
G. Work with the adult provider so that both are
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involved in your youth’s care during transition?
H. Help your family plan for needed legal solutions
and supports if child/youth will be unable to
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independently manage his/her care?
Sharing Successes of the Family/Provider Partnership
FCC Components: 10
1. Do families, youth, providers and staff take
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time to share and enjoy successes?
FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
3
C A R E S E T T I N G P R A C T I C E S A N D P O L I C I E S
Giving a Diagnosis
FCC Components: 1, 2, 6
1. Does your provider:
A. Fully inform your family about all test results,
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positive and negative?
B. Fully inform your family about any diagnosis in a
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way that you can understand?
C. Help your family name and explain your child’s
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diagnosis to others?
D. Work together with your family so you can explain
how your child’s diagnosis might affect how she
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will be able to participate in school, social,
community and faith-based activities?
Ongoing Care and Support
FCC Components: 1, 2, 3, 4, 6
1. Does your provider:
A. Help you identify your strengths, skills and knowledge
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related to your child’s health care?
B. Ask you what is working well?
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C. Help you identify areas where you may need
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additional support?
D. Ask you about your child’s care based on your knowledge
about your child’s temperament, behavior and reactions,
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and other current personal and family needs and priorities?
E. Ask your family and child/youth to share information,
such as changes in daily routine or new stresses that may
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provide insight into the interpretation of test results or
diagnostic procedures?
F. Ask your family to initiate consultation appointments or
other meetings to discuss changes in your child’s care, for
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example, changes in medications, or other daily procedures?
G. Fully inform your family about diagnostic and treatment
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options in a way you can understand?
H. Encourage questions about treatment options and the need
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for any procedures?
I. Offer developmentally appropriate information (for example:
stories, workbooks, videos, web-resources, tours) to prepare
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your child/youth for medical testing and procedures?
3. Does your provider offer house calls, or other
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ways that care/treatment can be provided
where your child typically spends time?
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FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
4. If your family has difficulty traveling to
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specialty care settings outside of your
community, does your provider work with your
child’s specialists to help you minimize travel?
5. If your family uses alternative healing/non-
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traditional medicine, does your provider work with
you to integrate traditional and alternative healing
treatments into your child’s overall care?
Addressing Child/Youth Development
FCC Components: 3, 4, 6, 8
1. Does your provider:
A. Assess and document the developmental status of
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your child/youth?
B. Reassess care approaches at key developmental milestones
and transitions? (For example, when your child begins to
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walk, talk, begins school, enters puberty, and begins middle
or high school.)
C. Offer your child/youth educational opportunities to support
self-care? (For example, know how to make appointments,
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learn about insurance, medications, diet, and other aspects
of health care.)
D. Honor your family’s requests about how much you want
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your child involved in decision-making?
E. Include your child in making decisions in keeping with
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age and development?
F. Explain changes in who can give consent for care as your
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child gets older?
Access to Records
FCC Component: 9
1. Does your provider:
A. Explain your family’s rights and responsibilities under
HIPAA (laws about the privacy and sharing or medical
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information) in a way you can understand?
B. Have a policy to assure that financial issues, such as
copying costs, do not prevent your family from receiving
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copies of records?
C. Have a process to assist your family in understanding and
interpreting your child’s medical record? (For example,
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provides explanation of medical terms and answers
questions about content.)
D. Allow your family or youth to add information into the
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medical record?
E. Inform you of all policies that relate to when and how you
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can see, add to or get copies of your child’s records?
2. Do all staff that you work with at the care setting
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give you the same information about policies related
to medical records?
FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
5
Appointment Schedules
FCC Components: 6, 9
1. Does your provider:
A. Recognize your family’s schedule and cultural
events/holidays as important factors related to
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scheduling appointments?
B. Respond to your concerns about proposed scheduling
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of appointments and procedures?
C. Honor your request for a longer appointment to discuss
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complex issues?
D. Schedule appointments tailored to the needs of your
family, and child/youth? (For example, have “no wait”
appointments for patients who may have immune system
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problems or developmental /behavioral issues that make it
difficult to sit in the waiting room.)
Feedback on Care Setting Practices and Policies
FCC Components: 4, 9
1. Are there opportunities for families/youth to provide
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feedback about care and how the care setting
operates? (Examples include surveys, focus groups,
and suggestion boxes.)
2. Does the care setting have a formal advisory
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committee for family and youth to provide input on
policies and practices?
3. Are families/youth given mentoring, supports and
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other training to effectively participate on the
advisory committee, if they want it?
4. Does your provider make accommodations
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for your family and youth to participate in
advisory activities? (For example, English or
sign language translation, alternate ways to
participate, like via conference call or surveys.)
Care Setting Policies to Support Family-Centered Care
FCC Components: 4, 9
1. Does your provider share information with families
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about elements of family-centered care?
2. Does your provider explain care setting policies?
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3. Does your provider invite families or youth to
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do presentations for staff to learn about the
family perspective?
4. Does your provider invite families or youth to do
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presentations for staff to learn how their cultures
and values influence health care decision-making?
5. Does your provider offer stipends for sharing your
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time and expertise?
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FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
Addressing Culture and Language in Care
FCC Components: 4
1. Does your provider:
A. Ask your family about any cultural values, beliefs or
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practices that might relate to your child/youth’s care?
B. Honor your family’s beliefs and practices when developing
diagnostic and treatment plans? (This includes respect for
diet; customs regarding eating, bathing, dressing; religious
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rituals related to health; modesty concerns such as gender of
the provider, expected roles related to gender or generation.)
C. Offer trained interpretation (foreign language or sign)?
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D. Let other providers know about your need for interpretation
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services when making referrals?
E. Help your family find information and educational
materials that you can easily read or that don’t need
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reading, like videos you can watch?
F. Employ staff that reflect who lives in your community?
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C O M M U N I T Y S Y S T E M S O F S E R V I C E S A N D S U P P O RT S
Information and Referral and Community-based Services
FCC Component: 5
1. Does your provider:
A. Work with your family to identify needed
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community-based services?
B. Help your family make the first contact with
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community-based services?
C. Follow up to see if your family/child/youth has
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successfully connected with the service?
D. Follow up to see if the service was easy to access?
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E. Follow up to see if the service was useful?
Never
Some of the Time
Most of the Time
Always
F. Follow up to see if the service was respectful of your
Never
Some of the Time
Most of the Time
Always
family’s culture and values?
2. As your family circumstances change (changing
Never
Some of the Time
Most of the Time
Always
diagnoses, functional level, child transitions, change
in family make up, etc.), does your provider work
with your family to review current services and
help identify new community-based services you
may need?
FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
7
Community Systems Integration and Care Coordination
FCC Component: 5
1. Does your provider:
A. Include any community-based services your family uses in
the medical record? (Examples include early intervention,
Never
Some of the Time
Most of the Time
Always
Head Start, childcare, community recreation programs,
vocational rehab, faith-based activities.)
B. Have a staff person that helps your family connect with
Never
Some of the Time
Most of the Time
Always
needed services?
Thank you for taking the time to complete this self-assessment tool.
We welcome your feedback. Visit www.familyvoices.org to share your
ideas and suggestions for how we might improve future versions.
8
FAMILY-CENTERED CARE SELF-ASSESSMENT TOOL: FAMILY TOOL
