March 2022
Developmental Disabilities Awareness Month – What does it mean to you?
From the Editor
What does “developmental disability” (DD) mean on a personal level for those of us living with DD? In this issue, we asked parents and people with disabilities what they would like us to be aware of along with what barriers they face. You may find yourself recognizing some of the joys and frustrations expressed here.
Best to you and yours,
Maria Schaertel
Personal Perspectives on Developmental Disabilities
Luis Velasquez:
“I am a person, not my disability.”
Kai Owens:
“There are many assumptions about me because of the way I look. I am a male of color, tall, bearded, and have dreadlocks; today’s society looks negatively upon that. I also have many barriers, and to top it off, I have an invisible disability. Because they cannot see it, they do not believe it. And it is okay. It has made me stronger, I have persevered through many barriers so far!”
Jeiri Flores:
“I would say our invisibility is what I want people to be aware of. We aren't a part of initiatives or conversations that are meant to create change such as community building efforts and planning tables. Physical accessibility is one of the biggest barriers I face.”
Parent Perspectives
Maritza Cubi, parent and Starbridge Family Support Services Manager (pictured above with her family):
“As a parent I have always and continue to bring awareness to the importance and value of seeing him as a person before a disability. For Luis it is very important to be included in all or most events, or opportunities like everyone else. He does not want to only be included in things designed for individuals with disabilities. Luis loves being included in typical inclusive opportunities. For Luis, it is important that the environment is modified to meet his needs and this usually means having wheelchair accessibility, access to a location where he can be as independent as possible.
The barriers we face mostly involve physical access. This includes ramps, bathrooms, and even the amount of space at the location can be a barrier, as he is expected to stay in a corner; Luis finds himself alone, waiting for others to approach him or include him.”
Ann Cole, parent and Coordinator of Adult Connections and D21 Facilitator, AutismUp (Ann's children Spencer and Olivia are pictured above):
“I think the majority of those not understanding disabilities just assume that adults with significant disability will go to group living situations, and therefore receive adequate care. But the reality is that the numbers of people with disabilities needing support are increasing, but the support available is decreasing - it is a very scary time.
One of the biggest barriers we face are those that come after school ends. Employment, transportation, appropriate support staff- the list is daunting. Caregiver freedom is non-existent. When there is a shortage of staff (direct support personnel, DSP) then parents are the only recourse. Since agencies are also finding it difficult to attract DSP’s because the pay rates are too low, families go without services. Caregivers cannot make plans when forced to step in to provide care.
On top of navigating caregiving, there is this underlying nagging from the state to continually prove disability to receive support. It’s exhausting.”
Julie Hartfield, parent and Starbridge Family Education Specialist:
“With the word ‘disability,’ some would assume the things a person cannot do versus what they can do! My advice is: Always assume competence. My son has an invisible disability that complicates things, but despite it all, my son is happy, very optimistic and always finds the positivity in everything and everybody. He is a cool guy.”
Did you know?
In 2021, Starbridge hosted a series of online conversations featuring presenters with lived experience of disability and other marginalized identities. Intersectionality: The Pieces of Me was created by activists and advocates Jeiri Flores and Sabrina Smith.
If you missed the live sessions, you can watch them here on Starbridge's YouTube channel.
Revitalizing Self-Advocacy
Please join self-advocates and families from around the state for an important conversation!
The pandemic and staffing crisis have created significant challenges to the Self-Advocacy network in NYS (SANYS). It is important that self-advocates and families and SANYS reconnect to revitalize and re-energize self-advocacy. They are asking everyone who supports self-advocacy to come together for a conversation about overcoming challenges, celebrating self-advocacy, and exploring steps to rebuild lost connections.
To join the Zoom meeting on March 30 at 1:00pm, use this link https://us02web.zoom.us/j/88433136961
If you cannot attend this meeting, please reach out to your SANYS regional office to learn about other opportunities to reconnect at sanys.org/regions
Join us for a Bridges Focus Group!
Do you have ideas about changes you'd like to see made to Bridges? Your voice is important! We will meet virtually in May via Zoom. Just email me at mschaertel@starbridgeinc.org and I will provide you with the Zoom link and meeting date and time. All participants will receive a $10 coffee gift card, in exchange for sharing your ideas and opinions.
Additional Resources
What are developmental delays? - article from Understood
Waiting Lists for IDD Services Balloon - article from Disability Scoop
NYS Office for People with Developmental Disabilities - website