If your child has special health care needs, chances are you will become very familiar with the health care system and providers in Alaska. While there are times we have to seek care out of the state, we have a wide menu of health resources that exist in our state and thankfully it continues to grow.
Your child’s health care provider might be a Pediatrician, Family Practitioner, Public Health Nurse, or Community Health Aide. Some children with special needs benefit from programs and professionals who help with nutrition and dietary needs. However, at the center of it all is you and your family. This guide is not intended to tell you what path to take, only to show you the options so you can best support your family’s unique needs.
Medical Home
A medical home is not a place, it is a model of care that looks at the big picture when it comes to an individual’s healthcare needs. Healthcare has become segregated, particularly when it comes to children who have complex medical issues. There is a specialist for neurological issues, another for behavior issues and another for speech and language. One medical professional may or may not be aware of what the other is doing. A medical home attempts to bring together these fragmented pieces to offer coordinated care through a team-based approach. Healthcare providers like the Alaska Native Medical Center and The Anchorage Neighborhood Health Clinic have incorporated this model into their system of care. Studies have shown that implementing this model of care not only reduces the need for emergency medical care and improves patient outcomes; it also reduces medical costs.
The idea of using a medical home is not a new concept but it has gained momentum in recent years in an effort to improve health care for the patient and the bottom line. Just like the Paper Trail Notebooks provided by Stone Soup Group, this system of care helps centralize information. Although not every facility or primary care provider may be using this model, families can encourage their regular physician or pediatrician to help them create a version of a medical home in various ways.
How?
- Find a medical provider you feel comfortable with and know will be around for more than a few years.
- Send all your reports from specialists to that primary care provider so they are aware of progress.
- Encourage communication between specialists and other providers.
- Request referrals and recommendations based on this information.
- If your physician is leaving your community, request a “team meeting” and make sure you have everything in place for information to be shared freely.
Remember, even when a medical home is in place, parents are responsible for sharing information and for seeing to it that the primary health provider is informed on all aspects of their child’s care. For more information about medical homes and what is happening in Alaska visit: www.medicalhomeinfo.org
Public Health Nurses
Public Health Nurses provide home visits and well-child check-ups which are especially helpful to families of high-risk infants. Public Health Nurses provide your family with information, resources, education, emotional support, care coordination, nutritional information, and/or health monitoring.
AK Info Toll free 1-800-478-2221
Public Health Nurses: Municipality of Anchorage 343-4800
Public Health Nurses: State of Alaska 465-3150
Women, Infants & Children (WIC)
Women, Infants & Children is a Maternal, Child and Family Health program. With sites throughout Alaska, WIC stretches your income by providing vouchers for healthy foods that can be purchased at the grocery store each month along with ideas for delicious healthy meals. Pregnant or nursing women and families with a child under the age of five must meet income eligibility requirements to qualify for this program.
For information on WIC, call the AK Info Line: Toll free 1-800-478-2221
Pediatric Specialists
Pediatric specialists are pediatricians with additional education and training in a specific area. There are pediatric specialists in many different fields from eyes and ears, to feet and toes.
They are trained to treat infants and children and understand how to relate to and take care of much smaller humans. If you need to take your child to a specialist, you might want to choose a pediatric specialist.
If you are looking for a local specialist you can check our “find a provider” tool online.
Long-term Infant Follow-up Evaluation Program (LIFE)
The LIFE Program consists of a multidisciplinary team for infants who spent time in a Neonatal Intensive Care Unit. Developmental specialists, a developmental pediatrician and a parent navigator check your baby’s development and provide information and referrals that you may need. The team specializes in assessment of infants and toddlers who are at higher risk for developmental delays.
The LIFE Program is for infants up to the corrected age of two.
For information on the LIFE Program: Anchorage 562-9212
Sub-Specialty Clinics
The specialists at these clinics address specific concerns of family and health providers. The pediatric sub-specialty clinics in Alaska may be sponsored by the state, a hospital, or groups like the Shriners or the Muscular Dystrophy Association. Your child’s doctor or health care provider receives schedules of the sub-specialty clinics and can arrange appointments.
State of Alaska Specialty Clinics or Genetics Clinics- Section of Women’s Children’s and Family Health: Anchorage 269-3460 Toll free 1-800-799-7570
The Children’s Hospital at Providence Alaska – Pediatric Sub-specialty Clinics 261-4824
Center for Children with Special Needs 562-9212
The Pediatric Clinic of the Primary Care Center at the Alaska Native Health Care Center in Anchorage 729-1000
If you are looking for a local specialist you can check our “find a provider” tool online.
Home Health Care / Home Health Aide
In-home medical care provides support for infants and children who are medically fragile or use special medical equipment to keep them healthy and at home with their families. A Home Health Aide, a Registered Nurse or other health care specialists may provide this care. Chore Service Providers and Home Health Aides are available to help with grooming, dressing and household chores. These care services may be paid for by your health insurance, Tax Equity & Fiscal Responsibility Act (TEFRA) or Medicaid Waivers. If you need this kind of help, a phone number is listed below. Also visit the “GOOD CENTS” section for more information on TEFRA and Waivers.
State of Alaska Medical Assistance Hotline:
Anchorage 562-3671 or Toll free 1-800-211-7470
Medical History & Information
Staying organized can be a bit of a challenge, so Stone Soup Group developed the Paper Trail notebook to help. It’s a place to keep together copies of your child’s developmental history, medical records, therapy and school reports, business cards and phone numbers. The Paper Trail is easy to take along to appointments so you can share information or add to it. Copies of the Paper Trail notebook are available from your local Infant Learning Program or Stone Soup Group.
Medical Equipment & Supplies
If your child needs medicines, equipment, diapers (for Medicaid eligible children over the age of 3) or health care products such as skin creams, you may choose to use just one medical supplier. Some suppliers have regular delivery dates, so you can save yourself the trouble of ordering each month. In addition to medical supplies, they can also provide specialized equipment such as child-size wheelchairs and walkers or items such as easy-to-use spoons and bowls. They can tell you what is paid for by health insurance or by other health benefits listed in the “GOOD CENTS” section. Loan closets are also an option when insurance may not cover an item.
ATLA: Anchorage 563-2599 Toll free 1-800-723-2852
Access Alaska Loan Closet: 248-4777 Toll Free: 1-800-770-4488
Dental Care for Children with Special Needs
To learn more about at home care see our Oral Heath Care Packet which will review tips on home cleaning and other community resources.
Sometimes health conditions or medications are cause for extra attention to your child’s oral health. There are pediatric dentists who have experience caring for children with special needs. Some ways to deal with young patient’s fear and stress could be through frequent visits to the dentist to build your child’s trust or perhaps by using sedation or general anesthesia for routine dental procedures.
When choosing a dentist for your child, don’t hesitate to mention your child’s needs and ask the dentist if he or she is experienced in that area. You want to choose a dentist that you are comfortable with and who can understand your child’s special needs. You may call Stone Soup Group for a list of dental providers.
If you are looking for a local specialist you can check our “find a provider” tool online.
Becoming Independent: A Guide to Help Adolescents Develop Skills for Healthcare Transition
Adolescent Healthcare Transition is the process of teaching adolescents’ skills and knowledge to
gain independence for managing healthcare needs as an adult. Healthcare Transition should
occur over several years to be most effective and gives the adolescent, their parent/ caregiver,
and pediatric healthcare provider(s), time to prepare for the eventual transfer of healthcare
needs to adult provider(s). Download the > Adolescent and Parent Transition Planning Guide And Care Plans.
