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Navigating Oregon’s disability services system on behalf of someone you love can feel overwhelming — but it doesn’t have to be. This guide will give you the tools and knowledge to become an effective advocate, so the person you support can live life to its fullest potential.
Understanding how to advocate within the intellectual and developmental disability (I/DD) access services system is key to making sure that support reflects real-life needs. Successful advocacy isn’t just about paperwork and meetings. It’s about protecting the ability to live independently, participate in the community, and stay safe at home.
Everyone has a role to play in disability advocacy. Even business owners and local community members are major players in helping people of all ability levels experience a good quality of life as valued members of society.
Oregon’s system provides and/or oversees benefits to adults and children with I/DD. Multiple types of assistance are available depending on eligibility:
The disability service system can be overwhelming initially. However, taking time to learn what Oregon has to offer will lead to better outcomes for the individual you are supporting.
LEARN MORE: Oregon Department of Human Services (ODHS): Intellectual and Developmental Disabilities
Disability advocacy is more than raising awareness, although it’s a good first step. Foundational disability advocacy is about building knowledge and abilities that ensure equal opportunity, dignity, and full community participation.
LEARN MORE: Overview of the Americans with Disabilities Act.
The first step in the approval process is to understand working definitions of developmental disabilities and/or intellectual disabilities (I/DD).
In Oregon, whether an individual with I/DD is eligible for support services is determined by Community Developmental Disabilities Programs (CDDPs). County CDDP workers assist with the eligibility process.
LEARN MORE: Definitions of I/DD.
LEARN MORE: Phone listings of CDDP agencies in Oregon that determine eligibility and provide case management services.
Many types of disability support services could be available. For example,
The more you know about available services for your loved one, the better you will be able to advocate for their needs.
There may be situations in which support services are reduced or denied. This could happen for a number of reasons:
It’s particularly during these times that disability advocates are crucial to those whom they support.
ODDS oversees intellectual and developmental disabilities services for Oregon. This system is built on many critical partnerships:
Their main role is to use these partnerships to help people with I/DD to acquire skills and receive accommodations to live full lives in their home and community.
The Oregon Needs Assessment (ONA) determines the maximum number of hours individuals receive monthly. It’s based on a service group scoring that ranges from ‘very low’ assistance level to ‘very high.’
The Individual Support Plan (ISP) authorizes the number of allocated hours that the individual receives monthly. We dive into the details of these two documents below.
Good advocacy is an important collaborative link to ensuring that the beneficiary receives assistance for all real-life needs.
There are several situations in which good advocacy can be a great help to the individual with I/DD:
It’s important to understand that the ISP is person-centered. It’s based on the goals of the individual living with I/DD and their definition of living a good life.
The ISP controls the number of hours and the type of supports individuals receive. It’s considered a “whole life plan” that includes:
*The ISP doesn’t replace the IEP (Individualized Education Plan) or the IPE (Individualized Plan for Employment).
Services and support hours begin with the goals as stated by the individual with I/DD. Service coordinators, family members, health care professionals, and others collaborate with the individual to recommend the services/supports needed to achieve goals.
Without effective documentation, paying entities (e.g. Medicaid) refuse to provide funding to access services. Check out these practical examples of need-based documentation:
Both improvements and decreases in health or behavior affect services. These changes necessitate adjustments to both the ONA and the ISP. Changes in health/behavior status are common throughout the lifespan, from school-aged children to older adults.
Certified ONA assessors gather information on functional abilities through file reviews, observation, case managers, and others (such as family members).
After an assessment is complete, the person with I/DD receives a service group score. This score determines maximum hours of in-home supports that an individual receives monthly.
A main reason people lose support hours has to do with the workforce crisis of qualified service workers. The turnover rate is high, resulting in long waitlists for qualified staff.
Poor documentation has a negative impact on support hours. Records need to reflect that service hours are helping individuals to stay safe and healthy. Additionally, notes need to document specifics on how individuals are reaching and/or working on their goals.
On the positive side, support hours might decrease due to achievement of goals or lower needs for assistance. These achievements should be celebrated.
One of the best things an advocate can do is to equip the person they are supporting with self-advocacy skills. This builds self-confidence and improves independence.
Preparation is critical to a successful ISP meeting. Here’s what you can do:
Try to relate unmet needs to basic ADLs (dressing, bathing, self-feeding) and instrumental ADLs (medication management, grocery shopping, what to do in case of emergency).
This will put the assessor “in-the-shoes” of the individual. Explain how his/her income decreased when safe transport to work isn’t available. Relay how the person had behavior problems during a community outing (and how the DSP was able to prevent an outburst).
Explain how effective interventions would prevent:
Keep the name and number of your service coordinator and case manager handy! This is the first stop in changing services.
In these days of budget cuts, staff shortages, and lack of understanding, reductions and denials of services do occur. Here’s what you can do:
An appeal involves asking for an administrative hearing. Requests can be made by an advocate, family member, or friend (a lawyer isn’t necessary).
You can appeal when services are:
Or when:
There are 2 ways to request a hearing:
Hearing requests must be received within 90 days of the date of the Notice of Eligibility Determination. If this deadline is missed, a late hearing request will be accepted if the Claimant or the Claimant’s Representative had “good cause.”
Various documents can help your case. Here are just a few examples:
*Disability Rights Oregon has clear and detailed information on hearings, deadlines, and documentation. GO HERE to learn more.
Check out these specific supports and a brief snapshot of their value. We’ll supply links for you to learn more.
We have found at ALSO that even the advocates need support! Here are several available resources in Oregon.
ALSO operates in nine counties in Portland, Eastern and Southern Oregon, and Central Oregon. We have 25-plus years of experience in helping advocates, self-advocates, and family members cut through the confusion of obtaining much-needed support services. Review our step-by-step guide and feel free to contact us for questions: (503) 489-6565.
*You can also contact the applicable Oregon County service coordinator.
A bit overwhelmed? Let’s summarize with some main points:
At ALSO, we’ve walked this path alongside families and advocates for years — and we’re here to walk it with you. Whether you have a question, need guidance, or just want to know you’re not alone, reach out to our team today.
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