March is DD Awareness Month
Niko's March Blog Post
A New Blog Post from Niko Boskovic
Recently I read an article about a family that made a pretty radical decision to put their three neurotypical children in a boarding school and live at home with their autistic son. I should clarify that their son is a teenager with some hardcore behaviors that made the other kids fearful for their safety and resentful for all the ways their lives were impacted by their sibling’s erratic behavior. I get it – I really do – and want to share my perspective.
I lost my ability to speak early on. I was probably two years old, but my parents didn’t catch on until about a year later. Even then they were told to give me time to sort out the languages I was hearing (Serbian and Lithuanian). I remember how frustrated I was trying to find the needed word, but it was all garbled in my mouth. It didn’t happen overnight, but gradually, under the radar of my parents. I wasn’t too concerned, but I didn’t know why it was happening. I started to feel frustrated when I couldn’t get my parents to understand what I needed. It didn’t matter what I wanted: I might have been hungry or tired. Maybe I was trying to explain what I was feeling at a given moment. I know I came into this world autistic, but it all got a little too intense right around the age of three. That’s when everything got too loud, too bright, too much for me to absorb, so I shut down. I couldn’t handle all that stimulation, so I turned inside. It was the safest way to protect myself, and it was an intuitive reflex which, I have no doubt, is shared by all autistics. It meant that to the outside world, I was unreachable and so hard to engage.
Had I not been able to learn a way to separate all the sensory channels coming at me, I do believe there would have been times when I would have become violent. I mean, I was ten and in a special ABA program where they were teaching me my ABC’s. The reality was that I had taught myself to read in Kindergarten, and had no way to let anyone know. This continued for five or six years, and I was so terribly bored. Can you imagine what that was like?
Governor Brown Announces March as DD Awareness Month
2019 DD Awareness Month Proclamation
WHEREAS: Nationwide over five million people have developmental disabilities; and
WHEREAS: More than 66,213 adults and children in Oregon have developmental disabilities; and
WHEREAS: Oregonians with and without disabilities live and work side by side across Oregon to form strong, diverse communities; and
WHEREAS: Every person, regardless of ability, has valuable strengths, infinite capacity to learn and the potential to make important contributions to their local communities; and
WHEREAS: People with developmental disabilities in Oregon share, with the state’s 4.2 million residents, a vision to live good lives full of meaningful relationships, lifelong learning, and access to the many wonderful resources we all share; and
WHEREAS: Families of people with developmental disabilities deserve recognition for their commitment to helping their family member achieve that vision for their good life as an independent and contributing member of their community; and
WHEREAS: “Developmental Disabilities Awareness Month” is an appropriate time to recognize Oregon’s public policy accomplishments on behalf of persons with disabilities and to also identify the improvements to public policy that are needed to fully include all of Oregon’s citizens with developmental disabilities.”
NOW, THEREFORE: I, Kate Brown, Governor of the State of Oregon, hereby proclaim March 2019 to be Developmental Disabilities Awareness Month in Oregon and encourage all Oregonians to join in this observance.
Oregon ABLE Accounts
Financial empowerment for people with disabilities
In 2014, Congress signed the Achieving a Better Life Experience or ABLE Act into law. The ABLE Act allows states to create financial empowerment programs that encourage people with disabilities to save money – without losing their state or federal benefits. Oregon and several other states have implemented ABLE programs to help people with disabilities save. Oregon’s program was approved by the legislature in 2016 and is managed by the Oregon 529 Network. Since then, about 1,800 Oregonians have saved over $7.5 million in their own accounts.
Oregonians who own ABLE accounts can save up to $100,000 without losing their state or federal benefits. They can use this money to pay for living expenses – like education, housing, transportation and medical costs. The accounts are low cost, take about 15 minutes to set up and are easy to access. It’s also easy for family and friends to contribute to a person’s ABLE account. While these accounts benefit most people with disabilities, those who have a Social Security representative payee have not been able to access them, until recently.
The IRS allows a parent, guardian, or Power of Attorney to manage ABLE accounts for people with disabilities; however, rep payees who are individuals or organizations are not included. The Oregon program offers limited Power of Attorney to individual rep payees. This allows them to help people manage their accounts. You can find the limited Power of Attorney form and learn more here: https://oregonablesavings.com/alr-info.
There isn’t currently a way to allow organizations limited Power of Attorney. The Network is working on solutions to address this barrier. In the meantime, we hope to see many more people with rep payees access Oregon’s ABLE savings plans. Learn more about the Oregon ABLE savings plan at oregonablesavings.com.
Mission and Vision
Our mission is to advance social and policy change so that people with developmental disabilities, their families and communities may live, work, play, and learn together. Our vision is that all communities welcome and value people with disabilities and their families.
Guiding Principles and Beliefs
1. We believe disability is a natural part of the human experience.
2. We believe people with developmental disabilities and their families...
Define their own families and sources of support.
Are successful when they make informed choices and control their lives.
Are most effective when they work together for social and policy change.
Are more likely to succeed when we expect them to succeed.
3. We believe communities...
Are welcoming when everyone is valued.
Are better when members act together.
Thrive when everyone contributes.
4. We believe support service systems are most effective when...
Families are supported to raise children in stable and loving homes.
People are supported to live the lives they want in their communities.
Supports are based on individual strengths, goals and community.
They are accountable to the people they serve.
OCDD: Live TogetherWork TogetherLearn TogetherBetter Together
OCDD works toward a world where all communities welcome and value people with disabilities and their families.
People with disabilities are at the heart of OCDD’s mission and work. Watch the videos below to see how these talented Oregonians contribute to the communities where we all live, work, and play.