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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 can be paid to provide care to their enrolled child.

The program started July 1, 2024. Due to limited funds, the program has a waitlist. Learn about the program waitlist.

Join the waitlistFamilies joining the programContact us

This program is for children under 18 who:

  • Have an intellectual or developmental disability (I/DD) or are eligible for ​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.

Beginning Nov. 1, 2024, any parent or guardian can add their child to the program's waitlist. Learn more in the waitlist section below.

Children enrolled in the Children’s Extraordinary Needs Program can get up to 20 hours of paid care per week from their parents and guardians.

Within its current budget, the program can only serve 155 children at once. So, the program has a long waitlist. As spots in the program open, ODDS will contact the parents or guardians of the next child on the waitlist. The child’s services coordinator will contact the family to discuss options. If a family wants to join the program, ODDS will confirm if they are eligible.

Eligible parents and guardians will get training and a criminal background check. Families will also update their child’s Individual Support Plan.​

Paid caregivers have different rules to follow than paren​ts.

Learn more about the program and rules in the Frequently Asked Questions​.

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.

1,557 children were eligible for the program when it started. The program’s budget only had enough money to serve 155 children at once. ODDS randomly selected 155 from the 1,557 children. These families had first choice to join the program. ODDS sent letters to these families in May 2024. Each child’s services coordinator contacted the family to talk about their options. Families had about two months to decide whether to join.

Children with numbers higher than 155 went on the program’s waitlist. In August 2024, ODDS contacted the first 53 children on the waitlist. ODDS offered them the spots unclaimed by the original 155 children.

Going forward, ODDS will contact the family of the next child on the waitlist as spots in the program open.

Timeline of program's launch


About the waitlist

We understand the strong need for this program and its benefit for children. Being on the waitlist may be 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 know the true cost per child. We may be able to increase the number of children served. Right now, our budget of $3 million per year can't cover all eligible children. To serve more children, the Legislature would need to approve more funding.​

  • 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 waitlist, they are first in line.
  • We don’t know how fast the waitlist will move.
  • Of the initial 155 children selected, 53 did not join the program.
  • In mid-August 2024, ODDS sent letters to the first 53 families on the waitlist. The letter explained how to join the program. We also notified these children’s services coordinators. They contacted families with next steps.
  • As spots in the program open, ODDS will send letters to the next family on the waitlist. We will also notify these children’s services coordinators. They will directly contact families with next steps.
  • Contact us for your child's place on the waitlist and other support.​

Beginning Nov. 1, 2024, at 8 a.m., any parent or guardian can add their child to the CEN Program's waitlist. Fill out the form linked below. If you need help, please ask your child’s services coordinator. They can also submit the form. The program’s staff will add new children to the end of the existing waitlist in the order we receive their applications. If your child is already on the waitlist, you don’t need to take any action.

Newly eligible ​children:

  • Live in their family home or could move back to their family home.
  • Are assigned to the highest Oregon Needs Assessment (ONA) service group, 5b and 5m. This group is for children with very high medical or very high behavioral support needs.
  • Had their ONA completed after May 2, 2024. Children with ONAs that placed them in the 5b and 5m service group before May 2 are already on the waitlist.
  • Meet intermediate care facilities for individuals with I/DD, hospital, or nursing facility level of care.

​ ​ To add your child to the waitlist, do one of the following:

  1. Fill out and submit this form online. (English only)
  2. Print the form in your language: English, E​​spañol (Spanish)​, اللغة العربية (Arabic), 简体中文 (Chinese Simplified), Русский (Russian), Af Soomaali (Somali) or Tiếng Việt (Vietnamese)​.
    • Fill out the printed form.
    • Mail the form to:
      Children's Extraordinary Needs Program
      Developmental Disabilities Services
      500 Summer St NE, E09
      Salem, OR 97301-1075

Program staff will confirm they​ received your form.


Update: Waitlist data display error corrected

On October 8, ODDS discovered a data display error. The error affected how services coordinators viewed the CEN Program waitlist. They view the waitlist in an online system called eXPRS. From September 5 to October 10, the waitlist numbers of 30 children appeared incorrectly in eXPRS.

ODDS corrected the data display error in eXPRS on October 10. Staff completed a manual review of the waitlist data in eXPRS. They confirmed all of the waitlist numbers are now correct. We apologize for any confusion this error may have caused members of the I/DD community.



For families joining the program

ODDS sent you a letter that there is an opening for your child in the Children's Extraordinary Needs Program. 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.

Contact usFind a provider agencyTrainingResources 

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."


Training for parents and guardians

Parents and guardians must complete training before becoming paid providers. You’ll learn about federal and state requirements to be a paid provider. Your employer can help you access this training in Workday. If you prefer, you can take training before a provider agency hires you. Complete the training on demand on Workday

Training in English Training in Spanish

Para hispanohablantes - Abra la Guía de Configuración y siga las instrucciones paso a paso para crear una cuenta de “EE Learner” (en inglés).

If you need this training in another language, please contact us.


Resources

Waiver and K Plan services for children

Parents can use this chart to compare this 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.


Self-advocacy for children

These tools are for case managers. They can help children learn how to advocate for themselves when choosing and managing direct support professionals.


Contact us

For questions about the Children's Extraordinary Needs Program, email the program.

To find out your child's place on the waitlist, contact your child’s services coordinator. 

If you need more support, contact your child’s services coordinator.