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Tools
for Families
Reactions by families on the Medical
Home
Sign me up! I’ll take one of them!
It seems all organized.
Everything is at your fingertips that way—easy
access.
Something like this would take the weight off…….you
could relax a little….
Knowing that you’re not the only one fighting
to get something—that there’s somebody else
there doing that for you—being your advocate, it’s
very positive.
With one, you wouldn’t have to repeat yourself
20 times—the same thing and you hope you tell them
everything.
It sounds too good to be true.
Complete care. Complete care that runs smoothly.
From The Ohio Medical Home Focus Group Project. A collaborative
effort by FACCT–The Foundation for Accountability’s
Child and Adolescent Health Measurement Initiative (CAHMI),
the Department of Health (ODH), and the Ohio Department
of Job and Family Services (ODJFS).
Medical Home
Information for Families
A Medical Home Includes
A partnership between your family and your child’s
primary care clinician
A relationship based on mutual trust and respect
Connections to supports and services to meet your child’s
and family’s needs
Respect for your family’s cultural and religious beliefs
After hours and weekend access to medical consultation about
your child
Families who feel supported in caring for their child
Your primary care clinician working with your team of other
care providers
Tips for Families: Building Medical Home Partnerships
When you visit your child’s primary care clinician's
office:
Bring a list of questions or concerns to discuss
Share information on how your child is changing (progressing,
regressing, etc.)
Ask about resources that may help your child and family
Ask about how to get care after hours if needed
Ask to meet the office staff that will be working with you
and your child
(Nurses, referral coordinator, billing person, etc.)
Show appreciation
The Benefits of a Medical Home
1. You regularly see the same primary care clinician and
office staff who know your child and family;
Who partner with you in coordinating care for your child
Exchange information with you honestly and respectfully
as you learn from one another
2. Your family feels supported in finding resources, for
all stages of growth and development of your child
3. Your family is connected to information and family support
organizations
4. Your Medical Home partnership promotes health and quality
of life as your child grows and develops into an adult
- Adapted form the brochure
Medical Home: Families and Providers Working Together
- developed by the Washington Medical Home Leadership Network.
Interactive Web Based Medical Home Overview: What Families Need to Know about a Medical Home
Explains the Medical Home Model for families and children
with special health care needs. It explains the family-professional
partnership and how it relates to accessing quality health
care. The primer goes on to explain how families can become
proactively involved in Quality Improvement Teams in their
primary care provider's practice. There are links to the
AAP web site describing what others states are doing to
promote Medical Home, a downloadable Parent-Partner Guide,
Power Point presentations, and information about the Illinois
Title V CSHCN Program. Developed by the Illinois Medical
Home Team.
Catalyst Center Health Insurance and Financing Toolkit: (http://www.hdwg.org/catalyst/Financing_Toolkit.php)
The Catalyst Center is a national center dedicated to improving health care insurance and financing for children and youth with special health care needs (CYSHCN). They have created a toolkit of information for families on health insurance and financing that can be accessed at the link above.
Texas Medical Home Toolkit for Families Toolkit
Information for families on the concept of Medical Home and how to get one set up for your child or clients who have special health care needs. Includes: information to take to my child’s doctor about the help I need from him/her, and information on how to provide support to families who would like to have a medical home.
Parents as Partners in the Medical Home
Published in Exceptional Parent magazine in 2002.
- Helping
Children with Special Healthcare Needs
- Karen Burstein, PhD, and Tanis Bryan, PhD
The Medical Home is putting the emphasis on parents’
opinions on the best way to provide healthcare for children
with special needs.
- What
Should Medical Facilities Look Like?
-Karen Burstein, PhD and Tanis Bryan, PhD
Access to basic necessities and conveniences in medical
facilities can make an enormous difference to families
and children.
- Choosing
a Pediatrician
-Tanis Bryan, PhD, and Karen Burstein, PhD
Parents of children with disabilities define qualities
that make pediatricians and staff effective.
- A
Family-Professional Partnership
-Merle McPherson, MD, MPH, Gloria Weissman, and Bonnie
Strickland, PhD
Tools
for Families
- "Voices from Home 2006", Family Voices
This 65-page report provides information on activities of the Family Voices network of family and youth leaders in the states. Also included are highlights from the FV project, Kids as Self Advocates (KASA), data summaries, and charts of FV state initiatives and partners.
- Family
Survey of Medical Home Outcomes
This survey helps family's assess their child’s
health needs, family/caregiver concerns and satisfaction
of the care they are receiving and the amount of activities
and services they are coordinating for their child. Developed
by the Center for Medical Home Improvement.
- A
Guide for Parent and Practice "Partners" Working
to Build Medical Homes for CSHCN. A resource for families
serving as partners in the medical home process. Developed
by the Center for Medical Home Improvement
- Quality
Indicators of an Effective Pediatrician for Children with
Special Healthcare Needs Survey
...a useful tool for parents and caregivers as well
as physicians and staff. It provides a set of standards
that parents and caretakers can use to evaluate the quality
of care their children are receiving. Physicians can use
it to evaluate the quality of care they are providing
to children with special healthcare needs. Physicians
also can use the Survey as a guideline for staff training
and office management. Developed by the Arizona Medical
Home Team.
- Tools for Parents of Children with Special Needs
- Ableplay
When it comes to play time, children with disabilities are no different than other children. They too crave the perfect toy, the one with the right amount of bells and whistles, which will bring joy to their lives. The task of finding the right toy that is not only age appropriate but will also accommodate the needs of a child with a disability, falls in the hands of parents and family members who want nothing more than to please their child or grandchild. But their toy-shopping experience is different than other parents or family members whose children do not have special needs. There are thousands of toys from which to choose, but finding just the right one to match the varying abilities of each child with special needs can be a challenge.
Enter Ableplay.org (http://www.ableplay.org ), a toy rating system and Web site that provides comprehensive information on toys for children with special needs so parents, special educators, therapists and others can make the best choices for the children in their lives with disabilities.
Developed by the National Lekotek Center, the leading nonprofit authority on play for children with disabilities, AblePlay will provide parents, and the professionals who work with them, access to the most useful, product-specific information about the top play and learning products and toys for children with disabilities.
-
www.coping.org/specialneeds/coping.htm
This book by James J. Messina, Ph.D is intended
to be used by parents as a motivational reader and in
parent support groups as an outline for discussion and
stimuli for emotional response.
Topics include:
- Handling the Shock of Diagnosis
- Bonding with Your Child
- Lifelong Normalization
- Addressing the Spirituality of Parents and Their
Children with Special Needs
- Communicating with Children About Their Special
Needs
- Handling Discrimination
- Parental Advocacy
This monograph from the National Center on Accessibility
addresses not only how having a child with a disability
can impact the family system, but also how families can
use their circumstances to become more resilient and healthy.
It also includes recommended reading for both adult and
child family members. To access this resource, go to: www.ncaonline.org/monographs/17family.shtml
Find a Pediatrician
The AAP Pediatrician Referral Service is intended for use
by the general public to allow them quick access to information
on pediatricians. If you are looking for a pediatrician
who specializes in the care of children with disabilities
and or children with developmental or behavioral issues,
you can use the Pediatrician Referral Service to search
for a pediatrician by specialty. You can also search for
a pediatrician by last name, city, state, zip code or area
code.
Click
here to access the AAP Pediatrician Referral Service.
(This link will take you to information on "terms and
conditions of use" of this service)
Brochures for Families
- A NEW WAY…A BETTER
WAY. The Medical Home Partnership: Building a Home Base
for Your Child with Special Health Care Needs: Brochure
This large-format brochure was developed by New England
SERVE for families in Massachusetts. It defines the Medical
Home Partnership and provides a checklist for families
to use in choosing a new physician for their child, or
as a way to start a conversation with their child's doctor
about Medical Home. The back page provides resources for
building medical home partnerships in Massachusetts. If
you are interested in replicating this brochure with specific
information for your state or community, please contact
Alexa Halberg at ahalberg@neserve.org
or by phone: 617/574-9493.
- A Medical Home: Consistent,
Knowledgeable, and Comforting Health Care Fact
Sheet
A message from Family Voices.
- Medical Home: Families and Providers Working
Together Brochure
This brochure provides definitions, benefits and tips
for families about having a Medical Home for their child
in Washington State. Available in PDF format in: English
and Spanish.
Brochure developed by the Washington State Medical Home
Leadership Network.
- Parent Tips: Building Early
Intervention Partnerships with Your Child's Doctor
Brochure
This brochure includes practical tips from and for parents
in how to choose, partner and talk with your child's doctor,
how to be an advocate for your child in early intervention
and involve your doctor in early intervention services
for your child. Available in: English · Cambodian
· Chinese · Korean · Laotian ·
Russian · Spanish · Vietnamese.
Brochure developed by the Washington State Infant Toddler
Early Intervention Program (ITEIP) and the University
of Washington Center for Human Development and Disabilities
(CHDD).
- What is a Medical Home: How
Can it Help Your Child with Special Needs Brochure
This brochure helps define a Medical Home and how can
you work with your doctor to improve care for your child.
Developed by the South Carolina Medical Home Team.
- Family Brochure: Every Child
Deserves a Medical Home Brochure
The Illinois Title V CSHCN program, the Division of Specialized
Care for Children (DSCC) has developed a brochure to help
families of CSHCN better understand how they can work
with their primary health care provider to establish a
Medical Home.
-
Define the Medical Home concept.
-
Define the common elements and assess
whether they have been incorporated into your child’s
care.
-
Understand the personal importance of
having a Medical Home.
I
want my Medical Home
A parent perspective on what a Medical Home means to families.
From the Center for Medical Home Improvement.
Paying for Care Coordination
A presentation from the Catalyst Center's topical conference call on May 8, 2007 on Financing for Children and Youth with Special Health Care Needs.
Last Updated December 4, 2008
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