CSHCN Administration & Programs

Description: State and nonprofits serving Children with Special Healthcare Needs (CSHCN), defined by the Maternal and Child Health Bureau as, "Those who have one or more chronic physical, developmental, behavioral, or emotional conditions and who. also require health and related services of a type or amount beyond that required by children generally."

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Note: Service listings do not represent a recommendation or endorsement by the Medical Home Portal staff or its sponsoring organizations; nor do they reflect any assessment of the quality or value of a listed Service.

UT

Statewide

Organization Name: CSHCN Bureau, Utah Department of Health
Address: 44 N. Mario Capecchi Drive
PO 144610
UT 84114-4610
Phone: 801-584-8455
Email: ckingsbury@utah.gov
Eligibility: Autism, reside in Utah
Services Provided: Through the Autism Systems Development Program, the CSHCN Bureau provides leadership that brings together many of the agencies and advocates who influence the statewide system of services for children with autism spectrum disorder (ASD) and their families.

The program has four components: Utah Autism Initiative (UAI), Utah Registry of Autism and Developmental Disabilities (URADD), Data System Integration, and ASD Resource Management. The ASDP:
- Refers individuals with ASD to services for evaluation and treatment
- Refers to care coordination programs
- Updates ASD diagnostic providers list
- Updates ASD treatment resources list
- Expands previously conducted ASD services survey to assess service needs and identify
barriers for care across Utah
- Compiles annual report summarizing ASD needs in Utah
Provider Profiles: Colin Kingsbury, Program Manager
M - F 8 - 5
Statewide
Original Source:
Last Updated: 10/11/2017
Organization Name: Utah Department of Health
Address: PO Box 144610
UT
Phone: 800-829-8200
Toll Free Phone: 800-829-8200
Fax: 801-584-8488
Eligibility: Utah children who have been diagnosed as having hearing loss who cannot receive a hearing aid through Medicaid or private insurance and are at or below 300 percent of the federal poverty level.
Wheelchair Accessible: Complete
Services Provided: Provides and promotes family-centered, care coordination and facilitates the development of community-based systems for children with special health care needs and their families. Direct Services provided by the University of Utah Health Care Center.
Programs include Autism System Development, Child Health Advanced Records Management (CHARM), Children's Hearing Aid Program, Critical Congenital Heart Defect (CCHD) Screening, Cytomegalovirus (CMV) Public Health Initiative, Early Hearing Detection and Intervention (EHDI), Fostering Healthy Children Program, Integrated Services Program, Kurt Oscarson Children's Organ Transplant Fund, Newborn Bloodspot (Heelstick) Screening Program, Technology Dependent Waiver, and Utah Birth Defects Network.
Provider Profiles: Lynne Nilson, Director, Bureau of Maternal and Child Health
Original Source:
Last Updated: 6/14/2018
Organization Name: Early Hearing Detection and Intervention (EHDI), CSHCN, UDOH
Address: 44 N Mario Capecchi Drive
UT 84113
Phone: 801-584-8215
Toll Free Phone: 1-800-829-8200
Fax: 801-584-8294
Email: ehdiparents@utah.gov
Eligibility: Qualifying children under 6 years of age who have hearing loss. Utah resident without Medicaid. If under 3, must be enrolled in early intervention.
Services Provided: To help families in need receive early access to hearing aids for their children. CHAP is currently accepting applications, and all necessary forms can be found by clicking on the website links. All application forms need to be submitted to your child’s audiologist who will then apply to the program on your behalf.

For more information, please contact your pediatric audiologist or Early Hearing Detection and Intervention at (801) 584-8215.
Provider Profiles: Stehanie McVicar, Program Manager
Go to http://www.ehdi-pals.org/ to find an audiologist in your area with expertise in diagnosing hearing loss and fitting hearing aids on young children.
Statewide
Original Source:
Last Updated: 1/18/2018
Organization Name: Children with Special Health Care Needs (CSHCN), Utah Department of Health
Address: 44 North Mario Capecchi Dr.
PO Box 144610
UT 84114-4610
Phone: 801-584-8284
Toll Free Phone: 800-829-8200
Fax: 801-584-8492
Email: ehdi@utah.gov
Eligibility: Infants with possible developmental delays.
Wheelchair Accessible: Yes
Services Provided: Administration of programs and training of professionals for newborn hearing screening in the state.
Goals. All newborns receive hearing screening before discharge or before 10 days of age if born out of hospital. For infants who do not pass, repeat the hearing screening no later than 14 days of age. If infants do not pass the second hearing screening, test for congenital Cytomegalovirus (CMV) infection before 21 days of age, complete a diagnostic hearing evaluation by a pediatric audiologist before 3 months of age. If infants are diagnosed with hearing loss, enroll infant into Early Intervention services before 6 months of age.
Provider Profiles: M - F 8 am to 5 pm
Program includes:
Children's Hearing Aid Program (CHAP)
Hearing Aid Recycling Program (HARP)

Stephanie McVicar, Program Manager
Congenital Cytomegalovirus (CMV) Coordinator - Jill Boettger email: cmv@utah.gov
Original Source:
Last Updated: 5/10/2018
Organization Name: Early Hearing Detection and Intervention(EHDI), CSHCN, UDOH
Address: 44 North Mario Capecchi Dr
Salt Lake City, UT 84113
Phone: 801-584-8215
Toll Free Phone: 800 829 8200
Email: chap@utah.gov
Eligibility: Children in Utah. Must have been denied coverage by Medicaid, and by insurance, and agree to return hearing aid to UDOH. No cost.
Services Provided: No cost hearing aids available. Donation of used hearing aids and unused batteries accepted. If you are in need of an audiologist possessing expertise in diagnosing hearing loss and fitting hearing aids on young children, you can go to http://www.ehdi-pals.org/ to find one in your area.
Provider Profiles: 3 Application forms on website: HARP Child Application Form, HARP Family Financial Form, HARP Audiologist Application Form. All application forms need to be submitted to your child’s audiologist who will then apply to the program on your behalf.

A collaboration with Utah Families, Audiologists, and the Utah Department of Health.
Original Source:
Last Updated: 2/8/2018
Organization Name: Bureau of Maternal and Child Health (MCH), Utah Department of Health
Address: 3760 South Highland Drive
UT 84106
Phone: 801-273-2988
Toll Free Phone: 800-829-8200
Eligibility: 0 - 18 years of age, children and adolescents with special health care needs in Utah. No fee. Spanish services available.
Services Provided: Assists families of children and youth who have special health care needs with coordinated care planning, education and resources, in order for them to make informed decisions. This may include primary and special health care, behavioral health, developmental and educational programs, financial support resources and social services that meet their special needs from infancy through the transition to adulthood.
Provider Profiles: M-F 8 - 5
Eric Christensen, Program Manager
Care Coordinators

Gina Pola-Money, Director, Family-to-Family (F2F) Health Information Center
Original Source:
Last Updated: 11/16/2017
Organization Name: Children with Special Health Care Needs (CSHCN), Utah Department of Health
Address: 44 N Mario Capecchi Drive
PO Box 144610
UT 84114-4610
Phone: 801-584-8270
Toll Free Phone: 800-829-8200
Eligibility: An applicant must be under 21 years of age at the time of admission; qualify for Medicaid based on the child's income and assets; meet admission criteria for nursing facility (NF) care; have at least one caregiver trained and available to provide care; require skilled nursing and/or rehabilitation services at least five days per week and be dependent on one or more of the following: a mechanical ventilator; tracheostomy-based respiratory support; continuous or bi-level positive airway pressure support (C-PAP or Bi-PAP); or intravenous administration of nutritional substances and/or medications through a central line; and choose to receive home and community-based services. A limited number of children may be served; child may qualify, but be placed on a waiting list.
Services Provided: The Technology Dependent Waiver program provides the day-to-day administrative activities for Medicaid’s Home and Community-Based Waiver for Technology Dependent/Medically Fragile Individuals. The Centers of Medicare and Medicaid approve state waiver programs to offer an alternative to long-term care facilities by paying for supports and services to allow recipients to be cared for at home and in the community.
Services include:
Skilled Nursing Respite Care
Family Support Services
Home Health Certified Nursing Assistant
Extended Private Duty Nursing
In-Home Feeding Therapy
Financial Management Services
Family Directed Support
Provider Profiles: Carrie Carter Program Manager, Technology Dependent Waiver
Applications are taken through the Division of Family Health Services case manager.
Original Source:
Last Updated: 6/14/2018

Nationwide

400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Address: 400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Services Provided: Dedicated exclusively to the promotion and protection of children's health through fundraising, grantmaking and providing an informed perspective. Packard Children’s Hospital and Stanford School of Medicine supports clinical care, research, and education to improve the health of children and expectant mothers, locally and worldwide. Programs include Improving Systems of Care for Children with Special Health Care Needs and Elevating the Societal Priority of Children, providing wide-ranging, up-to-date data and research by tracking the status of California's children over time through its website, www.kidsdata.org.
Original Source:
Last Updated: 2/21/2018