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Aging parents of adults with disabilities are persistently troubled by the same looming question:
“Who will support my son or daughter when I can’t?”
Here’s a scenario we hear all too often. Maria and Jim are two of these older adults. They’ve done everything they can to support their son, Michael, who was born with cerebral palsy and is also living with an intellectual disability.
Michael is 23 and works at the local rec center. He lives in one half of a small duplex owned by his parents, who live in the other half. Maria (54) and Jim (61) support Michael by helping him manage his medications and finances. They also provide transportation when he needs it.
Although they’re incredibly happy with Michael’s progress, these loving and caring parents face a harsh reality. Eventually, they will develop their own disabilities, simply due to the aging process.
They fear that, without proper support, Michael will eventually be abandoned by a complicated web of disability services. Both are understandably anxious about his future. On top of that, they are dogged by guilty feelings: ‘What could I have done differently?…We should have saved more money.’
This family isn’t alone. The Centers for Medicare and Medicaid Services indicate that over one million households nationally include an adult with I/DD who is supported by an aging caregiver. Approximately 87% are parents.
At ALSO (Advocates of Life Skills and Opportunity) we provide actionable solutions for aging caregivers of adults with intellectual and developmental disabilities (I/DD).
We know that planning ahead provides a strong foundation upon which all other solutions are built. It’s a valuable action that provides peace of mind — not because something is wrong today, but because it protects the future of your loved one.
In this article, the team at ALSO helps readers learn how to use Oregon’s developmental disability services so that ongoing supports are available as soon as they’re needed.
In addition, we’ll demonstrate how ALSO supports persons with I/DD throughout the lifespan. We’ll dive into the details of ensuring that benefits and financial resources will always be protected.
By the end of the article, you’ll be well-equipped with resources and practical advice on supporting your loved one throughout their adult life.
At ALSO, we recommend that parents and guardians plan ahead for their child or young adult with I/DD at around age 50. If either parent has a health condition, we recommend that future planning take place sooner.
Families should not wait for a crisis to start the planning process. This could easily interfere in informed decision-making and the ability to get appropriate benefits.
There are multiple benefits to planning for transition services and benefits early:
In short, a better future plan creates better opportunities to make a positive impact on the life of someone you love.
LEARN MORE: Transitioning from Youth to Adult Disability Services in Oregon.
The Oregon Office of Developmental Disabilities Services (ODDS) is the umbrella organization for adults and children living with I/DD. ODDS is part of the Oregon Department of Human Services.
Services are coordinated by county through individual support services brokerages that provide case management, in-home, and community-based services.
Caregivers can get a wide variety of service options for their family members, such as:
Eligibility for services is determined by the Oregon Community Developmental Disabilities Programs (CDDPs). There must be evidence of an intellectual disability before age 18 and/or a developmental disability before age 22.
Because eligibility determination is confusing, ALSO advises contacting your local CDDP office for help. Please note that wait times for children’s services may be different than for adults.
Oregon has several Medicaid Waiver programs that provide additional benefits to family members with I/DD. Although the programs have eligibility requirements, once eligibility is awarded there is no waiting list. This is due to a lawsuit filed by 6 people with developmental disabilities in 2000.
ALSO has extensive experience in helping parents navigate children and adult services programs in Oregon. Check out our article on How to Get Disability Services in Oregon.
We’re more than just service providers. ALSO helps supported individuals in building relationships with community members, learning new skills, and living life to their full potential.
Every day, we work to create a real sense of belonging in the lives of people with I/DD through volunteering, recreation, and other forms of community engagement.
Here’s a sampling of ALSO services:
We help those we support explore job and career options that interest them. We provide guidance and training during the application process and throughout job-coaching.
Helping adults live independently with the needed supports in community settings. We respectfully collaborate with the individual to create a person-centered plan that fits needs and abilities.
ALSO provides wrap-around services that meet unique needs. ALSO facilitates community participation and engagement in the least restrictive environment.
Important Point: As support needs change with age, having the right services already in place makes future planning easier.
Every family is different. There are several legal decisions that aging parents might adopt to ensure future care of their young adult with I/DD.
Important Point: Oregon disability services favor the least restrictive environment.
ALSO advises that caregivers work with experienced attorneys. Disability Rights Oregon (DRO) and The Arc of Oregon provide advice on various guardianship alternatives in Oregon.
These two essential tools protect aging caregivers and their children.
SNTs are also known as Supplemental Needs Trusts and are beneficial to the quality-of-life of the individual because they provide additional financial support without putting government benefits at risk.
There are 3 types of SNTs: 1st party, 3rd party, and pooled trusts. First-party trusts are funded by the beneficiary. Third-party trusts are funded by someone else, usually called the ‘donor.’
A pooled trust allows funds deposited by multiple beneficiaries to be combined for purposes of investment and trust management. Each beneficiary still has their own separate account.
***SNTs must be used only for the sole needs of the beneficiary.
ABLE stands for Achieve a Better Life Experience. This is what an ABLE account does!
The financial limits imposed by government regulations leave many people with disabilities below the poverty level. ABLE accounts offer flexibility to save and invest money in accounts without jeopardizing SSI or SSDI.
There’s a maximum value of $400,000.00 for each ABLE account, to which further contributions can’t be made. If accounts go over $100,000.00, SSI can be affected.
It’s important to keep up with rules about ABLE accounts. Go to Oregon ABLE Savings Plan for more resources.
One of the most important actions parents can take is to create a letter of intent (LOI). LOIs give specifics on daily needs, supports, and preferences.
It’s important that you take notes and review this document at least once per year with the person you are supporting. We suggest including the following information.
Important Information: The Arc has a free downloadable planning guide for developing LOIs.
Get started today in planning for a bright future for your child or adult with I/DD. Take this scannable checklist and review it regularly.
Many Oregon resources are available to families who need them!
Future planning for your loved one doesn’t happen all at once. We encourage taking one step at a time. And if you choose, ALSO is there with you all the way. We are a trusted partner that helps Oregon individuals with I/DD and their families navigate every stage of life from childhood through adulthood and aging.
Contact ALSO to learn about residential care, supported living, employment, children’s programs, and community-based services.
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