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.
As a parent led organization, we recognize that caring for children with special health care needs is often complex. Like you, we are parents of children and young adults with physical, developmental, and mental health challenges, and we have firsthand experience negotiating the maze of health care services and programs in our state.
We assist families of children with special health care needs to become informed, experienced, and self-sufficient advocates for their children and themselves.
The Health Resource Services Administration (HRSA's) Maternal and Child Health Bureau (MCHB), together with its partners, has identified six core outcomes to promote the community-based system of services mandated for all children with special health care needs under Title V, Healthy People 2010, and the President’s New Freedom Initiative (NFI) designed to break down barriers to community living for people with disabilities. These outcomes give us a concrete way to measure our progress in making family-centered care a reality and in putting in place the kind of systems all children with special health care needs deserve. Progress toward the overall goal can be measured using these six critical indicators:
- Families of children and youth with special health care needs partner in decision making at all levels and are satisfied with the services they receive; (Partnering with Providers)
- Children and youth with special health care needs receive coordinated ongoing comprehensive care within a medical home; (Medical Home)
- Families of CSHCN have adequate private and/or public insurance to pay for the services they need; (Financing)
- Children are screened early and continuously for special health care needs; (Early Screening)
- Community-based services for children and youth with special health care needs are organized so families can use them easily; (Navigating Community Services)
- Youth with special health care needs receive the services necessary to make transitions to all aspects of adult life, including adult health care, work, and independence. (Transition)
Specific information can be found within the Outcomes Tabs to the right
Idaho Family Voices
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.
What to Expect From a Telehealth Visit (Youtube Video Link)
Qué esperar de una visita de telesalud (Enlace de video de YouTube)
This is a good overview of the process of having a telehealth visit, created by the Hawaii State Department of Health Genomics Section - also in Spanish!
Health Information Across the Lifecourse:
Children's Developmental Disabilities Services Council Rulemaking Update Letter
You can download PDF of the first page of the schedule here
You can download PDF of the second page of the schedule here
Here's the text of the letter:
The Department has made the decision to withdraw the proposed changes to the Children's Enhancement rules originally scheduled for the 2019 legislature. After hearing concerns from parents, providers, and other advocates, the Department believes more collaboration is needed to move habilitative intervention into the state plan, maintain the family directed option, and ensure agencies are able to adequately provide the state plan habilitative intervention services.
In order to facilitate ongoing collaboration, the Department is scheduling formal and informal negotiated rule making sessions beginning in September 2018 and continuing through May 2019. The first meeting will be held on Tuesday, September 11, 2018, from 1:00-4:00 PM, at 1720 N. Westgate Drive, Conference room 131, Boise, ID. Other meetings will be scheduled monthly, or more often as needed. To ensure families from around the state have the opportunity to provide input, video and in person meetings will be scheduled in other regions of the state.
Once on the website, select the rule making schedule tab in the right-hand column.
Since the current children's waiver expires on June 30, 2019, and habilitative intervention services can no longer operate under the current waiver authority, it is imperative new rules are written. These will be temporary-proposed rules and will take effect on July 1, 2019. In order for the rules to become permanent, they must be approved by the 2020 legislature.
By taking this action, it allows the Department and stakeholders the additional time needed to collaboratively address concerns with moving habilitative intervention services into the state plan.
We look forward to working together to create positive and effective services
Bureau of Developmental Disability Services
- The Enhancement Project work will continue through Legislative Session of 2020.
- The Department extended this project timeline to have more time for collaboration with participants and families.
- The Department has scheduled monthly meetings open to participants and families to hear your comments on the rule proposals. Meetings are scheduled in every Region throughout the state. This schedule will be distributed at the September meeting (details in the attached letter) and posted to the website.
- Intervention services will be offered through the State Plan/Medicaid Card as of July 1st 2019
- Support services (including FDS CSWs and Equipment) will continue to be offered through the Waiver/Budget as of July 1st 2019.
- Support services will continue to be paid for using a determined budget. The Department recommends the budget determination for supports to stay the same as it is now through June of 2020.
- FDS participants CAN choose both intervention and support services
MTM Non-Emergency Medical Transport FAQ's
On March 6th, Medical Transportation Management (MTM) will take over Non-Emergency Medical Transport in the State of Idaho, replacing Veyo in that capacity. Do you have questions about this? Here's MTM's Frequently Asked Questions for your information.
Youth Empowerment Services (YES)
Spearheaded by the Idaho Department of Health and Welfare (DHW), YES introduces a family-centered, strengths-based system of care focused on improving outcomes for children and youth with SED.
Click here to see the PDF showing how to get access.
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.
Idaho Medicaid received guidance from the Centers for Medicare and Medicaid Services (CMS) about changes in Federal law that will require Idaho Medicaid to make changes in how Children’s Developmental Disabilities (DD) Services are offered. Currently, Medicaid provides services for children with developmental disabilities through waivers granted by the federal government. With the new changes, states are being required to offer intervention services for Children’s Developmental Disabilities through Medicaid State Plans.
To assist in aligning with Federal law, Medicaid in collaboration with Family and Community Services (FACS) has established the Children’s DD Services Enhancement Project with a primary goal of moving intervention services into the Idaho Medicaid State Plan by July 1, 2018. To ensure success Medicaid and FACS recognize the importance of engaging stakeholders from the beginning to the end of the project.
To apply for assistance, there is now a form that includes full instructions available on the website. You can also access it by clicking this link.
Family To Family Project Purpose
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/
Promoting Children's Long-Term Health and Functioning: Applying a Life Course Approach to Pediatric Care for Children with Special Health Care Needs
Life Course Theory (LCT) takes into account variations in timing, timeline, environment and equity in experiences and exposures across individuals and populations—and examines the impact on health throughout life. Life course science has been embraced by health researchers, public health agencies, health policy experts, health care providers and leading academics in the U.S. and abroad. However, the translation of LCT to actual pediatric practice and systems has been slow to take hold in any organized way. Promoting life course implementation in pediatric care for children with special health care needs (CSHCN) requires a life course implementation framework specifically designed by and for this constituency, with the goal of helping pediatric practices define and become life course practice settings. As a first step in moving toward such a framework, this report outlines key themes identified through a literature review and interviews and consolidates them into six action areas for pediatric practices.
Download the report here.
Do you or someone you know have a child who has been diagnosed with Microtia and Aural Atresia?
We would like to make you aware of 2 Ears 2 Learn, a non-profit organization that collects and refurbishes used sound processors and provides them to qualified children with Microtia and Aural Atresia at no charge.
You can learn more about this at their website: