Get to Know the Health Care System
This section describes the many types of health care entities likely to encounter infants and toddlers who are deaf-blind. As you read through the descriptions, think about how they are represented in your state (e.g., location, services provided) and your project’s current level of engagement with them.
Neonatal Intensive Care Units (NICU)
Neonatal intensive care units (NICUs) are hospital-based departments that care for infants who require intensive support due to complex medical needs, including prematurity.
Key personnel:
- Neonatologists
- Registered nurses
- Nurse practitioners
- Physicians assistants
- Physical therapists
- Occupational therapists
- Ophthalmologists
- Audiologists
- Neurologists
- Developmental specialists
- Registered dieticians
- Social workers
- Discharge coordinator
Resources
- NICU Search – Find NICUs in your state
- March of Dimes Peristats – Perinatal data by state, including information about NICU admissions [select “NICU (PRAMS)”]
Clinics and Practices
NICU Follow-Up Clinics
NICU follow-up clinics provide assessment and follow-up for high-risk infants when they are released from the hospital. Key activities include therapy, parent support, and monitoring growth and development. They also play a key role in coordinating the often complex array of services these infants require.
Key personnel:
- Pediatricians
- Pediatric neurologists
- Developmental-behavioral pediatricians
- Nurses and nurse practitioners
- Audiologists
- Ophthalmologists
- Physical therapists
- Occupational therapists
- Speech-language pathologists
- Otolaryngologists (ENTs—ear, nose, and throat physicians)
- Social workers
- Psychologists
- Referral specialists
Developmental Clinics
Developmental clinics provide comprehensive evaluation, therapy, and referral for children with disabilities or complex health care needs. Services vary from clinic to clinic. They are typically hospital-based outpatient centers where many specialists work together to ensure that children’s care plans are coordinated.
Key personnel:
- Developmental-behavioral pediatricians
- Occupational therapists
- Physical therapists
- Speech-language pathologists
- Psychologists
- Behavioral specialists
Pediatric Medical Homes
Many children who are deaf-blind receive care through pediatric medical homes. These are outpatient clinics or offices that address both physical and mental health care needs— including prevention and wellness—and coordinate a patient's care across the broader health care system (e.g., specialists, hospitals, home health care, and community services and supports). The types of services vary from state to state. They are a common medical practice model for patients of any age and condition, but some specialize in the care of children with complex health care needs. State deaf-blind projects may learn about specific medical homes from families or health care providers of children already on their census.
Key personnel:
- Pediatricians
- Family practice physicians
- Nurses and nurse practitioners
- Social workers
- Care coordinators
Pediatric Palliative Care Programs
Palliative care is an approach to the treatment of patients with serious or life-threatening illnesses. Its goal is to provide relief from the symptoms, pain, and stress of serious illness and improve the quality of life of patients and their families.
Key Personnel
- Physicians
- Nurse practitioners
- Therapists (e.g., physical, occupational, music, art, massage, pain)
- Pharmacists
- Chaplains
- Social workers
Subspeciality Practices
Children with deaf-blindness often see health care providers with advanced training in specific areas of medicine, or therapists (e.g., occupational, physical) who provide care in private individual or group practices. State deaf-blind projects are most likely to learn about specific physicians or therapists from families or health care providers of children already on their census.
Key personnel:
- Geneticists
- Audiologists
- Ophthalmologists
- Otolaryngologists (ENTs—ear, nose, and throat physicians)
- Neurologists
- Physical therapists
- Occupational therapists
- Feeding specialists
- Speech-language pathologists
State Programs
Children and Youth with Special Health Care Needs (CYSHCN) Programs and Initiatives
As part of its CYSHCN programs and initiatives, the U.S. Department of Health and Human Services’ Health Resources and Services Administration (HRSA) funds a variety of state programs, including community-based services, family support, screening, and technical assistance for medical homes.
Act Early Initiative
The Centers for Disease Control and Prevention's Act Early Initiative promotes collaboration among early childhood programs in states and territories so children with developmental disabilities can be identified early and get the services and support they and their families need. Each state has a designated ambassador.
Resources
Early Hearing Detection and Intervention (EHDI) Programs
EHDI programs promote hearing screening by 1 month of age (ideally before hospital discharge) for all newborns, follow-up testing by 3 months for those who do not pass screening, and enrollment in early intervention services by 6 months if diagnosed with a permanent hearing loss. Their sole focus on identification and intervention for infants with hearing loss provides potential opportunities for collaboration.