Family To Family Health Information Center
Family To Family Health Information Centers (F2F-HIC) are established to provide information and assistance to families of children and youth with special health care needs. Idaho Parents Unlimited is the F2F-HIC for Idaho.
Family Voices Idaho
IPUL is the Family Voices State Affiliate Organization. Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities.
We provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.
Family Voices National Current Highlights:
- Family Voices is partnering with CDC to collect information about their knowledge/attitudes toward flu prevention and treatment. Participate by visitingwww.familyvoices.org.
- Community leaders and families raising children with Autism launched a new website; AutismAfter16. The site will be devoted to issues impacting the lives of adults on the autism spectrum, especially legal, financial, residential, employment and social issues. Visit www.autismafter16.com
Are you looking for information on a specific condition or a specialist close to you? Visit our partners at the University of Idaho - Center on Disabilities and Human Development (CDHD). This website allows you to search by keyword, topic, or location. If you know of a resource you would like added, just let us know.
Newborn Screening in Idaho
Are you familiar with how babies are screened for certain genetic and metabolic conditions in Idaho? The following information comes from the Idaho Department of Health and Welfare's Idaho Practictioner's Manual. The entire manual can be viewed here:
Idaho newborns are screened for all core and secondary conditions recommended by the College of Medical Genetics and the March of Dimes.
A description of these conditions start on page 33 and complete summaries are available on the OSPHL website: www .oregon .gov/DHS/ph/nbs/index .shtm .
• Congenital adrenal hyperplasia (CAH)*±
• Congenital hypothyroidism*
• Sickle cell disease and other hemoglobinopathies*
AMINO ACID CONDITIONS:
• Hyperphenylalanemia, including
FATTY ACID OXIDATION CONDITIONS:
• Carnitine uptake defect
• Carnitine palmitoyl transferase I deficiency (CPT I)*
• Carnitine palmitoyl transferase II deficiency (CPT II)
• Multiple acyl-CoA dehydrogenase deficiency
• Short chain acyl-CoA dehydrogenase deficiency
• Medium chain acyl-CoA dehydrogenase deficiency
• Long chain 3 hydroxyacyl-CoA dehydrogenase
• Very long chain acyl-CoA dehydrogenase
ORGANIC ACID CONDITIONS:
• Beta-ketothiolase deficiency (BKD)±
• Glutaric acidemia, Type I (GA I)*
• Isobutyryl CoA dehydrogenase deficiency (IBD)±
• Isovaleric acidemia (IVA)* ±
• Malonic aciduria
• Maple syrup urine disease(MSUD)±
• Methylmalonic acidemias (MMA/8 types)±
• Propionic acidemia (PA)*±
• 3-Hydroxy-3-methylglutaryl CoA lyase
• 2-Methyl-3-hydroxybutyryl CoA dehydrogenase
• 2-Methylbutyryl CoA dehydrogenase
• 3-Methylcrotonyl CoA carboxylase deficiency (3MCC)
• 3-Methylglutaconyl CoA hydratase deficiency (3MGH)
• Multiple carboxylase deficiency
UREA CYCLE CONDITIONS:
• Arginase deficiency
• Argininosuccinate lyase deficiency (ASA)±
• Biotinidase deficiency
* The screening test will not detect 100 percent of affected infants.
± Represent emergent conditions. Infants are at risk of illness or death in the first week or two of life.
The purpose of newborn screening is to identify infants at risk that require more definitive testing. As with any laboratory test, both false negative and false positive results are possible. Screening test results are insufficient information on which to base diagnosis or treatment.
Idaho Parents Unlimited receives funding to continue as the State Family to Family Health Information Center
FOR IMMEDIATE RELEASE
Contact: HHS Press Office
Affordable Care Act supports families of children with special health care needs
Health and Human Services (HHS) Secretary Kathleen Sebelius today announced $4.9 million in Affordable Care Act funding to support Family-to-Family Health Information Centers, primarily non-profit organizations run by and for families with children with special health care needs.
“These centers provide the information that families need to make health care decisions that are right for their children,” Secretary Sebelius said. “Family-to-Family Health Information Centers are a good investment, and have a measurable and positive impact on families, and communities.”
Created in 2005, the centers are state-wide, family-led organizations that provide information, education, training, outreach, and peer support to families of children and youth with special health care needs and the professionals who serve them.
The centers are staffed by trained family leaders who have children with special health care needs, and expertise in navigating federal, state and local public and private health care systems. HHS’ Health Resources and Services Administration (HRSA) oversees the centers.
“The centers benefit all families and especially those with the greatest needs,” said HRSA Administrator Mary K. Wakefield, Ph.D., R.N. “They reach out to families and help them and their children thrive.”
The centers have served hundreds of thousands of families and health care providers. Today’s funding will support 51 centers, one in each state and the District of Columbia. Each grantee will receive $95,700. A list of awards can be found at www.hrsa.gov/about/news/2012tables/120523familyvoices.html
For more information on the program, and other HRSA maternal and child health programs, visithttp://www.mchb.hrsa.gov/.
Information on the Affordable Care Act can be found at www.HealthCare.gov.
Idaho Parents Unlimited, Inc.
The Consortium of Idahoans with Disabilities
Children’s Benefit Redesign – Parent Feedback Survey Report
January 12, 2011
This report was created in response to a large number of calls to our agencies regarding the changes being made to Medicaid services for children with disabilities in Idaho.
The survey was created using Survey Monkey and was distributed via electronic email listservs and social networking sites, statewide. We will continue to collect responses, however, in an effort to provide quick feedback to both the Idaho Department of Health and Welfare – Family and Community Services as well as parents of children with disabilities, we have generated this report. Results are based on 195 respondents from December 20, 2011 thru January 12, 2012.
No comments made by respondents have been altered in any way. They have been entered exactly as they were in the original survey.
All survey responses are anonymous with the exception of those who agreed to share their contact information with the Department. To protect the privacy of those who did choose to share their information, a separate list will be given directly to the Department as the respondents did not agree to share their information with other organizations or individuals.
Due to the large amount of responses collected in such a short amount of time and the consistency in overall responses, we believe there is a need for more clarity and information to parents, as well as further training for regional staff.
On behalf of the Consortium of Idahoans with Disabilities and Idaho Parents Unlimited, we welcome any questions or comments.
Download the report here - Children's Redesign Survey
New! 2010-2011 Children with Special Health Care Needs in Idaho – Data Sheet – Family to Family Health Information and Education Center:
Bright Futures is a national health promotion initiative dedicated to the principle that every child deserves to be healthy and that optimal health involves a trusting relationship between the health professional, the child, the family, and the community as partners in health practice.
Launched by HRSA's Maternal and Child Health Bureau in 1990, the Bright Futures initiative is focused at the American Academy of Pediatrics and a collaborative of other federally- and State-funded Bright Futures projects (click below for select projects).
The Idaho Children's Special Health Program (CSHP) provides consultation, information, technical assistance and referral services for the families of children who have chronic illnesses and disabilities. CSHP works with families, providers and communities to help establish and maintain a system of information, provide referral and follow-up services.
CSHP also promotes parent-to-parent support networks to ensure that all families have access to support services and health benefits counseling, and attempts to build systems of care in collaboration with other child/family efforts to link community-based health, social services and education agencies.
Families with children and youth who have special health care needs need help with the numerous problems they encounter. The Family To Family project assists families with those problems, which include:
- Finding payment for medical care
- Obtaining help navigating public health care financial problems
- Seeking dialogue with other parents in similar situations
- Advocating for their child
- Looking for information to find community resources
- Linking to an established clearing house of information about health care issues
- Obtaining one to one assistance finding information and getting referrals for specific health problems
- Locating and attending workshops and obtaining materials about related health care issues, including information tailored to assist youth and parents in transition to adulthood
- Collaborating with Idaho's Family Voices and the national network of Family Voices, which are the technical assistance arms of F 2 F
- Gaining empowerment to make changes in established federal, state, and local governing systems
The Family To Family Health Information Center at Idaho Parents Unlimited provides these services statewide.
The Maternal and Child Health Library, located at Georgetown University, includes knowledge about caring for children and youth with special health care needs. It offers a selection of current, high-quality resources that analyze data, describe effective programs, and report on policy and research aimed at developing systems of care that are family-centered, community-based, coordinated, and culturally competent. A separate section lists resources for families. The final part of the knowledge path presents resources that address specific aspects of care and development, such as advocacy, early intervention and education, financing services, rehabilitation, screening, and transition. This knowledge path for health professionals, program administrators, policymakers, educators, researchers, and families will be updated periodically. For more information go to http://www.mchlibrary.info/KnowledgePaths/kp_cshcn.html
A leader in health policy and communications, the Kaiser Family Foundation is a non-profit, private operating foundation focusing on the major health care issues facing the U.S., as well as the U.S. role in global health policy. Unlike grant-making foundations, Kaiser develops and runs its own research and communications programs, sometimes in partnership with other non-profit research organizations or major media companies.http://www.kff.org/