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Children's Extraordinary Needs Program

The Children’s Extraordinary Needs program is for children under 18 with very high medical or behavior needs. Parents and guardians in the program can be paid to provide care to their child.

The program is set to start July 1, 2024.

Frequently Asked QuestionsTraining for parentsInformation for staff

This program is for children under 18 who:

  • Have an intellectual or developmental disability (I/DD) or are on the waitlist for the Children’s Intensive In-home Services​’ (CIIS) medically fragile or medically involved waivers, and
  • Are in service groups 5m or 5b on their Oregon Needs Assessment.

Parents and guardians must be able to work ​legally in the United States.

Children in the Healthier Oregon program are not eligible.

About 1,500 children may be eligible for the program. In May 2024, ODDS will send letters to these families. The letters will explain the process more. View these and other letters in the Timeline and letters from ODDS section below.

​The program only has enough money to serve 155 children at once. ODDS will randomly select 155 from the 1,500 children. These families will have first choice to join the program. ODDS will send letters to these families in May. Each child’s services coordinator will contact the family to talk about their options. Families will have about two months to decide to join.

Children with numbers higher than 155 will go on the program’​s waitlist. ODDS will send letters to these families in late May.

Children with numbers 1 to 155 will have the option to join the program. If they want to, ODDS will check to see if they meet the criteria. ​​If they do, the parent or guardian can be hired as a paid caregiver. They will take training and get a criminal background check. Families will also update their child’s Ind​ividual Support Plan.

Each child can get up to 20 hours of paid care per week from their parent caregivers. If there is more than one parent caregiver, they can share the hours. Paid caregivers have different rules to follow than paren​ts. These ​are explained in the Frequently Asked Questions​.

Talk to your child’s services coordinator to start the process. If your child is on the Children’s Intensive In-home Services (CIIS) waitlist, their staff will help you.

More information:

​Waiver and K Plan services for children

Parents can use this chart to compare the Children's Extraordinary Needs Program with their child’s current services. Children can get services from the K Plan and one waiver at a time. Talk to your child’s services coordinator about this decision.​

Not being selected is likely very frustrating, angering and disappointing. We know many families on the waitlist were strong advocates for this program. The program exists because of your perseverance and hard work. Thank you for your advocacy.

After the program runs for a year, we will be able to know the true cost per child. We may be able to increase the number of children served. However, under the current budget of $3 million per year, we won't be able to cover the 1,500 children who may be eligible. In order to serve more children beyond the current budget, the Legislature would need to approve more funding.

If you need help getting other support, please contact your child’s services coordinator. If your child is on the waitlist ​for a CIIS program, please email ciis.referrals@odhs.oregon.g​ov​​.​

  • ​The or​der of the waitlist will not change.
  • Your child will move up the list as spots in the program open. This means your child’s number will get smaller. When they reach number one on the wai​tlist, they are first in line.
  • We don’t know how fast the waitlist will move.
  • ODDS will send a letter to families on the waitlist to fill open spots in the program in August 2024. The letter will explain how to join the program. Services coordinators will also be notified. They will contact families with next steps.
  • Starting in September 2024, ODDS will send services coordinators an updated waitlist each month. Families can contact service coordinators to find out their child’s place on the waitlist. If your child is on the referral list for a CIIS program, please email ciis.referrals@odhs.oregon.gov.
  • After August 2024, any child can join the waitlist. To do so, talk to your child's services coordinator or email cenprogram@odhs.oregon.gov​. We will add them to the end of the current list.​

To get assistance​ from the Children's Extraordinary Needs Program staff, email cenprogram@odhs.oregon.gov​.

Frequently Asked Questions

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Find a provider agency

Agencies listed below are interested in hiring parent caregivers. Use the  search box to search by agency name or county. You can also  filter by service area. Be sure to click "Add filter."

Trainings for parents and guardians

ODDS will have intro training sessions for parents and guardians of the 155 children selected for the program. It will be live and online through Zoom. You must register ahead of time. You will get a confirmation email with directions to join the training. Please attend one of the three sessions. 

This training is required before you can become a paid parent provider. You will learn about federal and state requirements to be a parent provider. The meetings will have American Sign Language (ASL) and live captioning. For other supports or languages, please email us three business days before the meeting.

Children's Extraordinary Needs Program Parent Provider Training

History of the program

In July 2023, the Oregon government passed a law called Senate Bill 91. This law told ODDS to ask the federal government for permission to pay parents who take care of their children with disabilities. We listened to what parents and other people had to say about this idea. We had meetings and asked for opinions through a survey. We used what we learned to write and revise the request to the federal government. In January 2024, we sent the request to the federal government. And in May, the federal government said yes. This means the program will start helping families July 1, 2024.