OCCYSHN is Oregon's Title V public health agency for children and youth with special health care needs (CYSHCN). We identify and address issues affecting this population. Our work helps Oregon's CYSHCN receive care that is:

  •  accessible and affordable
  •  centered on the expressed needs and goals of the children and their families
  •  culturally and linguistically appropriate
  •  efficient and effective

To those ends, OCCYSHN's programs and projects address:

Data and analysis

OCCYSHN gathers and disseminates data, analysis, and evidence-informed strategies about the issues facing Oregon's CYSHCN.  This allows for informed decision-making at every level, including families, health care providers, administrators, and policy-makers.

Coordinated care

Children and youth with special health needs require more health care and related services than is typical. They are often served by multiple providers (like primary care, specialty care, educational programs, mental health, dental health, community services, etc.). When these services are coordinated, children, families, providers, and payers all benefit. OCCYSHN works with stakeholders statewide to build and support coordinated systems of care for CYSHCN.

Empowered families

OCCYSHN programs provide family members of CYSHCN with resources, information, and support. We increase families' capacity to care, plan, and advocate for their children. We also ensure that families of CYSHCN are represented in program and policy efforts aimed at serving them.

OCCYSHN is part of OHSU's Institute on Development and Disability. We are funded by a Title V block grant from the federal Maternal and Child Health Bureau. See About OCCYSHN for more information on our funding.

Insurance and Oregon CYSHCN

Forty-two percent of Oregon's children are insured by Medicaid (2015 data from the Kaiser Family Foundation). That's nearly 400,000 children. Here's what some Oregon families had to say about public insurance for their child with special health needs. (Quotes from OCCYSHN's 2014 Needs Assessment Survey):

"We recently became eligible for the K plan, which has changed our lives!! Before, we were barely making it and had medical bills up the wazoo, even with our private insurance. We are so thankful for the services through the K plan and the medical insurance it provides!"

"To expand on one of the things that is most difficult for us...The Oregon Health Plan/Medicaid has capped therapy services for our daughter at 12 total visits per year - this includes speech, occupational, and physical therapy…Our daughter is making huge progress, and now she is out of authorized therapy sessions, which means she will either stagnate or regress in her development. This has ripple effects throughout her life, as well as the lives of those around her, those people who live with her and care for her."

"There are some medical treatments that his doctor recommends for him, but because of the insurance that he has, he keeps getting denied. I'm hoping they actually find a doctor that will accept OHP so that he can get the test and treatment done. I will keep praying and hoping it happens soon."

According to the 2011-12 National Survey of Children's Health, 27.1% of insured Oregon families surveyed reported that the insurance did not adequately cover their child's needs. Here's what some Oregon families had to say about their living with inadequate health insurance. (Quotes from OCCYSHN's 2014 Needs Assessment Survey):

"Although we pay less than $100 in healthcare, it is because we are in a situation where if insurance does not cover the service then we go without."

"Even though my child is insured, we have a combined deductible of $3,000.00 annually. Not only do we pay out of pocket for most covered services due to the high deductible, many services are (a) simply not covered, such as medical checkups for prescriptions that cost $250.00 per visit, and four visits are required per year and her prescription that costs $160.00 each month, or (b) limited, such as a limit of 30 visits for speech, physical, and occupational therapies combined. My child needs these services. It would be very nice… to get services without having to break the bank each month so my child can get what she needs."

"Our Private insurance company refuses to pay for our son's needs. The insurance company has informed us that our son has a congenital birth defect/chronic condition, and they don't cover for those kinds of expenses. Furthermore, our son has multiple vision issues and they refuse to pay more than three months' worth of therapy. Our insurance company has told us that we need to seek assistance from other organizations (United Way, March of Dimes or disabled children.) NO primary care doctor has told us that our son has any long term disabilities. Our son suffers from Sensory Integration Dysfunction!"

"Quite often, additional monetary services are provided to families with children with disabilities who are at or below the federal poverty level. However, there are many families, like ours, who aren't at poverty level, but are barely getting by…Our family has moved into family members' house...4 of us are sleeping in one room, because we could not afford to pay our rent and pay for the equipment and services that our daughter needs. We aren't poor, but we aren't rich. Many families are stuck in the middle and faced with these choices."

We value your input.

If you have comments or suggestions about how we can best serve children and youth with special health needs, please contact us.