What is Oregon's Children's Extraordinary Needs program?

It is a 1915(c) Medicaid waiver program that lets parents and guardians be paid for up to 20 hours a week of attendant care for an enrolled child under 18. Children must have an intellectual or developmental disability or qualify for the CIIS medically fragile or medically involved waivers, and be in Oregon Needs Assessment service group 5m or 5b.

Oregon CEN waiver to serve 230 kids; comments due Nov. 25

Q: Who employs parent providers in the CEN program?

Parents are hired by a certified provider agency endorsed as a community living supports or standard model agency, and must meet the same qualifications as the agency's other staff. A parent cannot work for an agency in which the parent or a family member has an ownership, leadership or administrative role.

Oregon wants to raise the cap on its paid-parent Children's Extraordinary Needs waiver from 155 to 230 children at a time, backdated to July 1. Public comments are due Nov. 25.

policy · oregon · waiver · children · paid-family-caregivers · odds · public-comment · deep-dive

Direct Support News desk · October 23, 2026 · Updated October 27, 2026 · 4 min read

Oregon's Office of Developmental Disabilities Services (ODDS) wants to raise the cap on its Children's Extraordinary Needs (CEN) program, which pays parents and guardians to care for children with very high medical or behavioral needs. In an Oct. 23 public notice, ODDS proposed amending the CEN 1915(c) waiver so it can serve 230 children at a time instead of 155. Public comments are due Nov. 25.

What ODDS is proposing

The notice covers two waivers:

1915(c) CEN waiver. The number of children enrolled at one time would rise from 155 to 230, and the number who can be served over a year would go from 171 to 280. ODDS is asking the Centers for Medicare & Medicaid Services (CMS) to approve the change retroactive to July 1, 2026, the date the state began enrolling more children.
1915(b)(4) Fee-for-Service Selective Contracting waiver. This waiver lets ODDS set the number and type of entities that provide waiver case management. Its CEN case management cost projections would be updated to reflect the larger enrollment, also retroactive to July 1.

The state says the money did not change. The program started July 1, 2024, with what ODDS calls a limited budget from the Legislature, sized for 155 children. After about 15 months, ODDS found the average cost per child was lower than expected, so the same budget can cover more children. The department says CMS does not consider the change substantial, which is why it can ask for a retroactive date.

The Grants Pass Tribune reported on the proposal on Oct. 26 and noted that CMS approval is still pending.

Who the program serves

According to the ODHS program page, CEN is for children under 18 who have an intellectual or developmental disability or qualify for the Children's Intensive In-home Services medically fragile or medically involved waivers, and who are in service group 5m (very high medical) or 5b (very high behavioral) on the Oregon Needs Assessment. A child must also meet an institutional level of care. Children in the Healthier Oregon program are not eligible.

Enrolled children can get up to 20 hours a week of paid care from a parent or guardian. Even with 230 spots, ODHS says the program has a long waitlist and that it cannot predict how fast the list will move.

How parents get paid

Parents do not bill the state directly. Under Oregon's CEN rules (OAR 411-440), a parent provider must be employed by a certified provider agency endorsed as a community living supports or standard model agency, and must meet the same qualifications as the agency's other staff. A parent cannot work for an agency in which the parent or a family member holds an ownership, leadership or administrative role.

The rules also require the agency to hire the parent within 90 days of the child's enrollment, and the parent must deliver care at least once every 90 days. They bar payment for care during the child's public school hours (with exceptions for illness, surgery, shortened school days, suspension or expulsion), for homeschooling or tutoring, and for time spent on things not mainly for the child, such as household shopping or remote work. ODHS says parents must be legally able to work in the United States and must pass a criminal background check.

What this means for providers and DSPs

More parent hires for agencies. If CMS approves, up to 75 more families at a time could need an agency employer. Agencies already hiring CEN parents can expect more referrals; others may decide whether to join ODHS's list of agencies interested in hiring parent caregivers.
Different supervision. Parent providers are agency employees but work in their own homes for their own children. The rules on school hours, non-child activities and the 20-hour weekly cap make documentation and timekeeping a key compliance point for agencies.
Case management capacity. The 1915(b)(4) changes signal more case management work for CEN children, which falls on the entities ODDS contracts with.
Families still waiting. The waitlist means many families with children in the highest support groups will keep relying on other in-home supports, and on hired DSPs, while they wait.

How to comment

Comments are due by Nov. 25, 2026. Send them by email to odds.waivers@odhsoha.oregon.gov or by mail to the ODDS Medicaid waiver/State Plan analyst, 500 Summer Street NE E-09, Salem, OR 97301. Draft waiver text is posted on the ODHS waivers page.

Other states have taken different paths on paid family caregiving. North Carolina updated its CAP/C paid-parent toolkit this month, while Colorado moved to cut pay for parents caring for adult children and an Arizona audit found gaps in parent caregiver cost controls.