The Oregon Needs Assessment (ONA)
Published: 2024
Purpose of this Publication
This guide is designed to help you understand the Oregon Needs Assessment (ONA), how it may impact your in-home care support hours, and how you can prepare for possible service cuts and apply for exceptions. While we may not have answered every question or covered every possible subject, we hope you will find the information useful.
This publication is not a substitute for legal advice. Federal and state law can change at any time. Contact Disability Rights Oregon or consult with an attorney in your community if you need additional help.
Introduction
Since 2015, Oregon’s Department of Human Services (ODHS) has been working on changes to how it assesses the needs of people with disabilities, especially related to in-home care services. The state—working with contractors like Human Services Research Institute, ReBAR, Burns and Associates, and Mission Analytics—developed a new evaluation tool called the Oregon Needs Assessment (ONA). Disability Rights Oregon (DRO) had no role in putting the ONA together, though we did offer several significant criticisms.
The new ONA will change how many hours of in-home care services people with intellectual and developmental disabilities will get through the Office of Developmental Disabilities Services (ODDS). These changes may be frightening for a lot of people with intellectual and developmental disabilities, as well as their family, friends, and caregivers. Many people will likely see their overall budget of hourly supports reduced.
DRO was at the center of a lawsuit that halted in-home service cuts back in 2017 and, ever since, we’ve helped ensure people continue to get the services they need to thrive at home they choose.
What are in-home care supports?
Why do we have them?
Most people with intellectual and developmental disabilities can live independently or with family members or close friends and, sometimes, they need help with basic needs—also known as Activities of Daily Living, or ADLs. These activities can include eating and preparing meals, basic hygiene tasks like bathing and going to the bathroom, taking medications, managing behaviors, getting around in the community, and more. In-home care supports help make sure people can live the lives they want, where they want to live.
Everyone is different, and every person with a disability is different. Most people with intellectual and developmental disabilities brush their own teeth, for instance, without any kind of assistance, while other people may need reminders or hands-on support. We want everyone to be as independent as possible and, for that to be reality, we know in-home care supports must be tailored to maximize autonomy while ensuring people can meet their basic needs.
We also know that some people, because of their disabilities, handle basic needs differently. Most people with disabilities eat regular meals without restrictions, for example, while others have specialized diets, need their food blended to avoid choking, or receive supplemental nutrition from a tube. Because of these individualized differences, people may need different kinds or amounts of supports to live on their own.
Getting in-home supports is important because most people are happiest and healthiest when they live in their home communities, surrounded by family and friends. In the past, many people with disabilities were forcibly institutionalized or confined to locked facilities. This isolation often left us vulnerable, unhappy, unhealthy, and more exposed to abuse and neglect. People with disabilities should be entitled to lead the lives that they choose, maximizing their independence and happiness.
What is the Oregon Needs Assessment? (ONA)?
The Oregon Needs Assessment (ONA) is a kind of test used to measure how much assistance a person with an intellectual or developmental disability needs in their daily life. Based on test results, Oregon has said it will create an individualized plan and provide a certain number of in-home care support hours within several ranges.
When will the ONA take effect?
Most people receiving in-home care services have already had at least one round of ONA evaluations, and those who currently receive in-home care are unlikely to have their number of hours impacted until 2025. ODDS is performing the 2024 ONA right now without reducing hours, so you currently can see the range you may be awarded in the future.
What do I do if the ONA indicates my hours will be cut?
Most people cannot directly change a 2024 ONA result that shows likely cuts in 2025. Unless you have received a Notice of Proposed Action (NOPA), your in-home care hours are not being cut right now. Your hours may be cut in the future, however, particularly if nothing changes. While you can’t do much to change results now, you can prepare for possible service cuts in 2025.
What can I do to prepare for possible service cuts in 2025?
You should consider several steps right now that may help you in 2025. First and foremost, make sure you are clearly explaining your disability and needs. Remember that you are trying to make a clear record that may be reviewed by DHS staff, administrative law judges, or others who may not know anything about you. They need a clear picture of who you are, what kind of help you need and how often, and how you and your family will be impacted if you don’t receive needed in-home care.
Here are a few things you should do:
Tell the Full Story. Sometimes, people are self-conscious about their needs and tend to downplay them. It can be hard to admit when you need help, but you should not understate (or exaggerate) your needs. Think about how things would go if no one was in the house with you when making food, or eating, or brushing your teeth. What about if you went out to shop for groceries or do similar errands with no one with you? When you’re discussing needs during the ONA process or in later proceedings, make sure you present the whole story.
Make a Good Record. You know what you need and, while some things may seem obvious to you, someone else may not necessarily understand. An ONA application that just says, “he sometimes needs help with his behaviors,” for example, is not very specific or clear, and DHS will likely give you few hours of support as a result. A good strategy is keeping a journal for a few days or a week that details exactly how often a helper had to intervene, even if it was as simple as a verbal redirection or being present while you did a task. A journal is a good way to show what kind of help you need and how often you need it.
Your helpers can also assist you by reporting what they are doing, minute by minute, and you may be surprised to find your needs are higher than you would have guessed. A carefully tracked journal of how often someone needs assistance is very helpful in showing what a person’s real needs are.
Get Supporting Opinions. You may have doctors, nurses, therapists, support workers, and other people in your life who can tell DHS what your needs are. Try to get supporting statements from them, particularly if they have some kind of medical training. These statements will be most helpful if they are very specific types of help you need and how often, as well as how you and your household are impacted when you don’t receive it. Again, generalizations like “he needs a lot of help” or “it’s not safe for her to not have help on hand,” are less helpful than specific statements.
Talk to Your Service Coordinator or Personal Agent—Now! Your service coordinator or personal agent can help you prepare for the ONA process. A county service coordinator, for instance, has more information about how to get extra hours through the exceptions process (discussed below). Ask them what evidence would help you make your case for hours and, if you see obvious gaps, start talking with your service coordinator about how to address them. You should be able to apply now for an exception through your service coordinator.
Can I change the ONA result?
It is not clear that you would be helped by challenging your 2024 ONA score, or even that DHS would let you. The best thing you can do is be prepared for 2025 using the steps described above. By making the clearest record possible at the time of your ONA evaluation, you can make the best case for the in-home care hours you need.
What if there is no way the ONA will get me the hours I need?
As the ONA was being developed, DRO pointed out that many people with documented needs will still not get needed hours using the ONA. DHS says that any unmet needs will be addressed through the exceptions process. If you already know that you need more hours than the ONA is going to provide—or if you need 1:1 care 24 hours a day—you’re probably going to be asking for an exception. Your service coordinator can approve small amounts of exceptional hours, but if you have a greater need, someone from DHS’s Salem office will have to approve the exception. For many people with complex needs, this is the only way to really get needs met.
What if I am unhappy with the 2025 ONA hours I am granted?
When DHS sets your in-home care hours for 2025, you should get a “Notice of Proposed Action” or NOPA. That NOPA will tell you how you can appeal your ONA result. If you apply for an exception, you can also appeal the result. You may want to talk to a lawyer for advice in filing an appeal.
How do I apply for an exception?
Under ODDS’s new rules, you can ask for an exception “either orally or in writing,” and your service coordinator is supposed to assist you in filling out the form and gathering needed documents. You should consider doing this as soon as possible—if your or your child’s ONA score is Level 5. Even if you have had a bad experience in the past, the rules DRO pushed for should have improved the process. You may need some of the documentation, like the journal we discussed above, to support your request. The state has 30 calendar days to respond to a request for exception. If the state denies your exception request in part or in whole, they must give you a written explanation (a NOPA) for their decision
If your or your child’s ONA level is lower than 5, you should speak with your service coordinator.
Do I lose my services while I am appealing any decision?
No. You do not have to lose in-home care hours while your ONA appeal is being heard. If you get a Notice of Planned Action (NOPA), you can appeal the decision within the stated time frame and, if you appeal within 10 business days of when your number of hours decrease, you also have a right to request to keep your current hours until your appeal is resolved. ODDS rules state that, if you do not win your appeal, you may have to pay back the costs of those continuing services, but DRO does not encounter many cases where that happens.
What are some of Disability Rights Oregon’s concerns?
Past usage and lack of workforce: The Oregon Needs Assessment (ONA) relies largely on past usage of in-home care hours. DHS has frequently stated that many people with intellectual or developmental disabilities do not use their full allotment of hours, and it has decided any unused hours are excessive and unnecessary. Disability Rights Oregon consistently hears from our community members that providers are scarce, underpaid, and frequently working around difficult schedules and travel limitations. As a result, many families are not able to use their full in-home care hours because there’s simply no one to do the work—not because they don’t need the hours. Family members and friends end up performing essential work for free or worse: people with disabilities are forced to go without, again.
Unreliable behavioral supports: Another concern is people who need behavioral supports. We know ONA results were less reliable for these individuals and, particularly, for children. These kids may be among the most likely users to get fewer hours than they need without going through the exception process.
Limited methodology: The ONA’s methodology also had serious limitations in assessing how many hours were afforded to people with unpredictable and overnight needs.
We will be monitoring to see how DHS responds to these other known issues.
What is Disability Rights Oregon doing now?
Can DRO help me in this process?
Yes. DRO can offer some help. If you want to talk to someone about how to make the best case for hours and how to prepare right now, we offer limited information. If your hours are reduced in 2025, please let us know. We cannot represent everyone, but we want to know how things are going for people with intellectual and developmental disabilities in the new system. If we cannot represent you, we may be able to give you general information about how to appeal on your own.
Is DRO going to file a lawsuit?
We are closely monitoring this process. Lawsuits are difficult, take a long time, and may not be able to help every problem, but the ONA has several significant limitations. DHS’s analysis relies heavily on the exceptions process to avoid violating people’s rights, and we likely will not have a full picture of any legal claims until we see how the system operates in 2025. Courts are more likely to take action once someone is actually denied hours, not because it might happen.
Did DRO come up with the ONA?
No, DRO did not develop the ONA. The ONA was developed by DHS and several contractors that it hired over several years. DRO, along with other community groups, was allowed to see some of the research that led to the ONA and talk with contractors working on the project. DRO offered several significant criticisms of the ONA as it was being developed, most of which remain valid.
Will I or my family member be forced to live in a group or foster home?
We have begun hearing of service coordinators encouraging people to explore group homes or other residential settings for children because of reduced hours under the ONA. Unless living in a residential setting is your preference, you should not plan to move out of your home just because of your ONA score. You should strongly consider filing an appeal or an exception (or both). Please write us if you are advised to seek a residential placement in connection with your ONA score.
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Portions of this document may be reproduced without permission, provided that Disability Rights Oregon is appropriately credited. NOTICE: This document is not intended as a substitute for legal advice. Federal and state law can change at any time. You may wish to contact Disability Rights Oregon or consult with an attorney in your community if you require further information.
