IPUL Health

a doctor examines her patient

IPUL is Idaho's F2F HIC

Family To Family Logo

Idaho's 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.

Family Voices Logo

Family Voices aims to achieve family-centered care

IPUL is the Family Voices State Affiliate Organization. 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.

Financing and Eligibility

SSDI/SSI

Social Security

The Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI) programs provide assistance to people with disabilities.

The SSDI program pays benefits to you and certain family members if you are “insured.” This means that you worked long enough – and recently enough - and paid Social Security taxes on your earnings. The Supplemental Security Income (SSI) program pays benefits to adults and children with disabilities who have limited income and resources.

While these two programs are different, the medical requirements are the same. If you meet the non-medical requirements, monthly benefits are paid if you have a medical condition expected to last at least one year or result in death.

See the official page here.

This is a link to the application

How Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI) and employment can work together.

Here's a series of short, informative videos from the Idaho Department of Labor that go over how SSI, SSDI, and employment can work together. You can view the videos embedded below by clicking the title, or see them in a playlist on youtube by clicking here. (In both English and Spanish)

What is Supplemental Security Income (SSI)?

What is Supplemental Security Income (SSI)?

Supplemental Security Income and Work

Supplemental Security Income (SSI) & Youth Who Work

EPSDT

Early Periodic Screening, Diagnosis, and Treatment (EPSDT)

The Early, Periodic, Screening, Diagnostic and Treatment (EPSDT) benefit allows a child under 21 to receive medically necessary services that exceed the limits of the Idaho Medicaid plan. The EPSDT benefit is provided to ensure physical conditions or mental illnesses, which can affect a child’s growth or development are found and treated early.

Who can get EPSDT services?

If you are eligible for Children's Medicaid or CHIP, you can qualify for services under EPSDT. There are not different income limits for this program. Children enrolled in Medicaid are eligible for medically necessary screenings, diagnosis, and treatment for physical conditions or mental illnesses. If Idaho Medicaid doesn’t usually cover a service under basic plans, but it is listed in the federal Medicaid law, then it is coverable under EPSDT. Companies who provide these services to children enrolled in Idaho Medicaid must use EPSDT as a guide.

Idaho Health and Welfare EPSDT Website

EPSDT Prior Request Form

Optum Idaho manages the Idaho Behavioral Health Plan. EPSDT services through Optum are accessed through the following form:

EPSDT Optum (pdf)

EPSDT - A Guide for States: Coverage in the Medicaid Benefit for Children and Adolescents

The Medicaid program’s benefit for children and adolescents is known as Early and Periodic Screening, Diagnostic and Treatment services, or EPSDT. EPSDT provides a comprehensive array of prevention, diagnostic, and treatment services for low-income infants, children and adolescents under age 21, as specified in Section 1905(r) of the Social Security Act (the Act). The EPSDT benefit is more robust than the Medicaid benefit for adults and is designed to assure that children receive early detection and care, so that health problems are averted or diagnosed and treated as early as possible. The goal of EPSDT is to assure that individual children get the health care they need when they need it – the right care to the right child at the right time in the right setting.

EPSDT - A Guide for States

Developmental Disability

Children’s Developmental Disabilities

The Children’s Developmental Disabilities Program provides a system of care that has a wide array of home and community based services for children including intervention and support services. The system emphasizes evidence-based treatment methods, community integration, and family empowerment.

Children’s Developmental Disabilities Homepage

Apply for Children's Developmental Disabilities Services

Katie Beckett

Katie Beckett is a Medicaid program for children living at home with long-term disabilities or complex medical needs, who may be eligible for Medicaid services even if their family income is above Medicaid federal poverty guidelines.

For more information about the Katie Beckett program, see the webpage at the Idaho Department of Health and Welfare
https://healthandwelfare.idaho.gov/services-programs/medicaid-health/about-katie-beckett-program

Idalink

Idalink is the portal where you can apply for health coverage assistance, food assistance, cash assistance, and child care assistance.

https://idalink.idaho.gov/

Medicaid For Children

Medicaid for Children

Medicaid provides health coverage for children who meet certain eligibility criteria. There are several different Medicaid programs available to address specific circumstances and needs of children.

Medicaid for children with developmental disabilities whose familes income exceeds the general limits may be available through the Katie Beckett Program.

Children's Mental Health

Children's Behavioral Health

Children’s Mental Health (CMH) has been instrumental in the development of Youth Empowerment Services (YES), the new system of care in the state of Idaho for children with serious emotional disturbance. In addition, CMH Regional Mental Health offices provide connections and services for children and youth without Medicaid.

Children's Behavioral Health Homepage

Youth Empowerment Services Homepage

Children's Special Health Program

The Children's Special Health Program (CSHP) is a statewide financial assistance program for uninsured children with a qualifying medical condition(s) requiring long-term multi-disciplinary medical treatment and rehabilitative measures to improve ability to function. CSHP works with families, providers, and communities to ensure access to care that is family-centered, community-based, and culturally sensitive.

Visit the Idaho Department of Health and Welfare Children's Special Health program page here

Pregnancy / Prenatal Care

Pregnancy
Prenatal Screening

Pregnancy

Pregnancy

Did you know...

Every year nearly one million American women deliver babies without receiving adequate medical attention.
Babies born to mothers who received no prenatal care are three times more likely to be born at low birth weight, and five times more likely to die, than those whose mothers received prenatal care.
If you are pregnant, programs in your State can help you have a healthy baby. These programs offer medical care, support and advice for pregnant women, information about health insurance and other services you and your baby may need.

For more information about prenatal services from the U.S. Department of Health and Human Services click here.

Idaho Special Supplemental Nutrition Program for Women, Infants and Children (WIC)

WIC helps families by providing:

Checks to buy health supplemental foods from local grocery stores ( authorized WIC vendors)
Nutrition education
Help finding healthcare and other community services
Breastfeeding information and support

More information can be found here.

Office on Women's Health

The Office on Women's Health provides national leadership and coordination to improve the health of women and girls through policy, education and model programs. Click here for information from The Office on Women's Health.

Prenatal Screening

Prenatal Care and Screening

Prenatal Screening Links and Resources:

Idaho Perinatal Project - The primary purpose of the Idaho Perinatal Project is to reduce maternal and infant morbidity and mortality and to improve pregnancy outcomes throughout the state of Idaho.

St. Luke's Maternal Fetal Medicine | Genetic Counseling - They help clarify the risks for occurrence or recurrence of a genetic or inherited disorder or condition in specified family members. They help patients and families make sense of complex options for testing and interventions and explain the results of diagnostic tests

Prenatal Care and Testing (Eastern Idaho Regional Medical Center) - Prenatal care is the regular healthcare you will receive during pregnancy from your doctor, midwife, or other healthcare professional.

Kootenai Health Family Birth Center (Coeur d'Alene, Idaho) - Kootenai is one of only about 100 Baby-Friendly hospitals in the nation. This designation represents the highest standard of care for mothers and babies. A dedication to improving infant health through breastfeeding and other maternal-infant care practices in every department of the hospital helped Kootenai earn this distinction.

St. Luke's Clinic - Obstetrics and Gynecology - Obstetrics and gynecology is medical care for women of all ages that includes (but is not limited to):

High and Low Risk Obstetrics
TVT Surgery for Urinary Incontinence
Endometrial Ablations
Women's Surgery
Cancer Prevention
Pelvic Pain
Family Planning, Tubal Ligations
Endometriosis
3D/4D Ultrasounds in the Office
STD Screening

Newborn Screening

Newborn Screening in Idaho

Screening is required by State law:

The Idaho Legislature has instructed the Department of Health and Welfare to require that all babies born in Idaho receive two screening tests for Phenylketonuria (PKU) and other disorders that can result in mental retardation or other serious health problems. This procedure is called the “newborn screen,” or the “newborn blood spot screen.” This test should not be called “The PKU” or the “The PKU Test,” as Idaho now screens for more than 46 conditions. To learn more about the conditions tested for in Idaho, see the Idaho Practitioner's Manual.

What Specific Conditions Does Idaho Screen For?

This is a list of the conditions that Idaho screens Newborns for.

You can see the entire Idaho Metabolic Screening Panel at this link:

Idaho Metabolic Screening Panel
https://publicdocuments.dhw.idaho.gov/WebLink/DocView.aspx?id=3836&dbid=0&repo=PUBLIC-DOCUMENTS&cr=1

Baby's First Test

Newborn screening is just one of many things that happen in the first few days after a baby is born. The information found at http://babysfirsttest.org/ can help prepare expecting parents for the newborn screening process and answer common questions, such as: What should I do Before Birth? What are the Screening Procedures? How should I respond to the Results? What are the Screening Outcomes? What happens to the Blood Samples?

Hearing Assesment

The National Center for Hearing Assessment and Management serves as the National Resource Center for the implementation and improvement of comprehensive and effective Early Hearing Detection and Intervention (EHDI) systems. As a multidisciplinary Center, our goal is to ensure that all infants and toddlers with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention.

Click Here for more information.

Western States Regional Genetics Network

The Western States Regional Genetics Network is a federally-funded, multi-state project that seeks to improve individual and family health throughout the life course. The participating states and territories are: Alaska, California, Guam, Hawaii, Idaho, Oregon, and Washington.

Their activities aim to increases access to and reduce disparities in newborn screening and clinical genetic and genomic services for individuals with or at risk for heritable disorders. Click here for more information.

Genetics Testing Overview

From the National Oganaization for Rare Diseases - Genetic Testing 101 for Parents Webinar

Do you want to learn more about how genetic testing can be helpful in the diagnosis and management of rare diseases? These topics and more were covered in a NORD RareEDU webinar. In this recording, NORD welcomed Debra Regier, MD, Director of Genetic and Genomic Education at Children's National Hospital in Washington, DC, gives an overview of the different types of genetic tests, indications for their use, and their benefits and limitations. The recording also includes stories from patients and families who have had genetic testing and the impact it has had on their lives.

9/5/18

Genetics Resources / Diagnosis Information

Genetics Resources

Idaho Parents Unlimited has an internal tool that we use with families to help you navigate the complicated systems of genetics including trying to get a diagnosis for your child, accessing genetics services, understanding how genetics services may be paid for, and resources for specific diagnoses. Please feel free to contact us for more information. Furthermore, below are some links that may be helpful.

National Organization for Rare Disorders: Rare Disease Information Database
NORD's Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases.

Birth to Three

Idaho Infant Toddler Program

Idaho's Infant Toddler Program (ITP) coordinates a system of early intervention services to assist Idaho children birth to three years of age who have a developmental delay or who have conditions (such as prematurity, Down Syndrome, hearing loss) that may result in a developmental delay.

The ITP links children with services that promote their physical, mental and emotional development and supports the needs of their families. These can include therapeutic, educational, and supportive services, such as:

Family education
Speech therapy
Occupational therapy
Service coordination
Family training
Counseling
Home visits
Health services

Children referred to the Infant Toddler Program are assessed to see if they meet program eligibility. If eligible, an Individualized Family Service Plan (IFSP) is written that outlines services for the child and their family. This plan is reviewed every six months. At three years of age, ITP assists with the child's transition to a developmental preschool program or other community services.

Idaho Sound Beginnings, the Early Hearing Detection and Intervention Program

Hearing Loss is the most common birth disorder in newborns. It affects how your baby perceives sound and is able to communicate with you and the world. 90% of infants with hearing loss are born to hearing parents. Please don't wait. Much can be done if hearing loss is identified early.

Zero to Three - National Center for Infants, Toddlers, and Families

ZERO TO THREE is a national nonprofit organization that provides parents, professional and policy makers the knowledge and the know-how to nurure early development.

Neuroscientists have documented that our earliest days, weeks and months of life are a period of unparalleled growth when trillions of brain cell connections are made. Research and clinical experience also demonstrate that health and development are directly influenced by the quality of care and experiences a child has with his parents and other adults.

That is why at ZERO TO THREE our mission is to ensure that all babies and toddlers have a strong start in life.

We know that as babies, the way we are held, talked to and cared for teache us about who we are and how er are valued. This profuondly shapes who we will become.

Early experiences set a course for a lifelong process of discovery about ourselves and the world around us. Simply put, early experiences matter. We encourage you to learn more about very young children, early development and the work of ZERO TO THREE by exploring our site.

School Aged Children with Special Health Care Needs

School Aged Children With Special Healthcare Needs

From HRSA:
Children and youth with special health care needs (CYSHCN) are those who "have or are at increased risk for chronic physical, developmental, behavioral or emotional conditions and also require health and related services of a type or amount beyond that required by children generally.

Oral Care

Oral Care and Transitioning to Adulthood

This is a lunch and learn IPUL did on May 26, 2021 with Angela Lindig and Stephanie Walters on the topic of Oral Care for children with special healthcare needs in Idaho.

Some of the barriers that families with children and youth with special health needs are facing include:

Not being able to find a dentist that will accept Idaho Medicaid (families are hearing that Medicaid requires more documentation and denies claims more often that other insurances)
Dentists that accept Idaho Medicaid are not accepting new patients
Dentists don’t have the training or experience in handling children and youth with special health needs, their diagnosis or needs (things like how the medications they take effect their dental health, how to provide comprehensive care like needing to do dental treatment under anesthesia, the struggles families face trying in taking care of their children’s dental needs (oral aversion, refusal to brush teeth, not being provided the resources and adaptive equipment to manage their child’s dental health)
Having to travel long distances to obtain dental care for their special health needs child (Primary Children’s Hospital, UT and Spokane)
Being denied orthodontic services that are medically necessary
Transition to adulthood (the challenges that families with children and youth face are even more difficult when they must transition from a pediatric dentistry provider to someone who will accept adult Medicaid)

Resources for families that were discussed included:

A Provider locater tool that was recently updated on the Idaho Smiles webpage that indicates dental providers who treat special needs
Member Services as a resource to provide assistance and stay on the phone to ensure that families are provided with excellent customer service and scheduled an appointment with a provider
If Member Services is unable to provide an acceptable connection, then a Idaho Smiles Case Manager would get involved
Idaho Smiles is accustomed to working with primary and secondary insurance scenarios (primary private dental insurance with secondary Medicaid (Katie Beckett)
Idaho Smiles emphasizes network development for providers that are not currently enrolled with Idaho Smiles (for example, if a provider accepts Delta Dental but is not enrolled as an Idaho Smiles provider, Member Services attempts to have that provider enroll and support them through the process to increase the number of Idaho Smiles providers throughout the state)
Idaho Smiles offers/provides case management services to any member identified with special needs; this is an elective program, not required; they have to obtain consent and will assist to ensure that member is able to obtain dental services that meets the member’s needs
Case management is available for pregnant women and special needs adults and children
Idaho Smiles will assist pediatric dental providers to continue to work with their patients as they transition to adulthood or help the member connect with a dental provider who provides adult care
Idaho Smiles works closely with Dr. Brooke Fukuoka who advocates for expanded access for dental care for adults with special needs; she created an organization that trains dental providers in Idaho to work with patients with special needs; she provides education to dental providers through a HRSA grant; she works out of a FQHC; she works with a special model to train dental providers; has hospital privileges; sees adult special needs patients in special care facilities; she has a website Your Special Smiles PLLC with education/resources for dental providers in working with special needs population; she provides portable dentistry
Orthodontic care is determined by medical necessity based on specific criteria adopted by administrative code; dental providers can request prior authorization of services as long as the orthodontic work has not already been started; can appeal decisions and provide additional information for review; Idaho Smiles allows for an orthodontic screen once a year as a benefit under the children’s program; dental providers can continue to submit prior authorizations as the child grows as a large majority of the denials for orthodontic treatment is based on requesting services prior to necessary growth of child
Part of a general dentist’s education and dental residency should cover special needs training but if not they have resources and work with their Dental Director and Executive Director to provide outreach and training
Idaho currently has 45% of dental provider population that services Idaho Medicaid population
Idaho Smiles Case Managers provide a dental health assessment, identify needs (such as transportation, translation, difficulty accessing care) and will provide services to the member as long as eligible and family requests services
Idaho Smiles also has a Member Advocate available to assist

Telehealth

Telehealth Information

Family Telehealth Advocate Training

This is a link to a telehealth training course for family advocates and others who work with families. This course will give you a foundation of knowledge about telehealth and where to find resources that families can use to connect to services by telehealth.

https://www.familytelehealthtraining.org/

This project is a collaboration of the Western States Family to Family Health Information Centers and Public Health Maternal and Child Health Programs, Western States Regional Genetics Network, and Pacific Basin Telehealth Resource Center.

What to expect from a Telehealth Visit:

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!

Transition Toolkit for a joint visit with Pediatric and Adult Health Care Clinicians and Transferring Young Adults

This tip sheet offers pediatric and adult clinicians sample content that can be used to facilitate a “warm handoff” to adult care as well as a sample resource for the transferring young adult that explains the telehealth visit.

Family Voices Telehealth Information

Family Voices National has created several resources that can be found on their website including these short webinars for telehealth basics:

Caregiving

Caregiving Information

Idaho Caregiver Alliance

The Idaho Caregiver Alliance is a coalition of individuals and organizations focused on expanding opportunities for respite across the lifespan.

The Family Caregiver Navigator Project

Sponsored by the Idaho Caregiver Alliance, the program helps caregivers connect with resources throughout Idaho to improve their quality of life.

Facebook Live with IPUL and the Idaho Family Caregiver Navigator Project
This is a link to a facebook live we did with the Family Caregiver Alliance about their navigator project which is linked above.

Resources

ACT Early Idaho

Act Early Idaho helps families and professionals monitor children’s development and identify concerns early. Monitoring children’s development is the first and most important step in identifying children who may need additional supports.

Act Early Idaho provides useful tools and materials for families with young children during COVID-19. These resources may help families adapt to changes in their routines and reduce stress, while promoting child and family resiliency.

Act Early Idaho also has several great resources on their page. There's a great virtual developmental monitoring training available for Birth-to-three and from three-to-five years old

Idaho Federation of Families for Children's Mental Health

The Idaho Federation of Families works to develop a coalition of groups and individuals to educate policy makers, professional organizations, legislators, educators, and the public about the needs of children with emotional, behavioral, and mental health challenges and their families. Fundamental to the Idaho Federation of Families is a focus on family participation and support.

Respite Care Options for Children in Idaho

A guide to Respite Care options in Idaho for Families Raising Children with Disabilities and Special Health Care Needs - PDF

Opciones de Cuidado de Relevo en Idaho para Familias que Crían Niños con Discapacidades y Necesidades Especiales de Cuidado Médico - PDF

What to Do When Your Child Exhibits Dangerous Behavior

- this is a PDF from the Ohio Department of Education - while the contact information is for Ohio, all the information in it is absolutely useful.