Towards a Disability Agenda
Blank slate. What are your disability issues? How do you want to work together to make change happen? If you can join us, we’re meeting face-to-face Wednesday to talk through some ideas. I know most of you won’t be able to come… but I really, truly, absolutely most sincerely want to hear from you. Global. Local. School district. City. County. State. Country. Everything can be put on the table. Nothing too big or too small… it’s time to Brainstorm (or Emailstorm if you can’t make it).
Reply or email me directly at: moc.canamlaytilibasid@evets
I’ll start after a quick, but relevant, digression.
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Welcome to Disability Drumbeat #5
Fellow Disability Change-makers –
Thank you for investing your precious time here.
If you find this newsletter useful, share it. I hope you’ll reply, share corrections (wow – too many typos last time – sorry), ask questions, make suggestions, or just chat.
If you are new here, shoot me a note or you can sign up for more of this (usually weekly on Sundays) at disabiltiyalmanac.com.
My bottom line is that
“Much Better is Possible” for children with disabilities and the disabled adults that they will become…
and I hope you want to help make that change happen. The unsubscribe link should be at the bottom of this letter or you can just reply to this email.
We are all in this together.
Steve
PS – Don’t forget to check out Riffs and Licks after the main article.
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Weekly Coffee #64
We’ll be brainstorming Disability Agenda items and organizational thoughts for our schools, community, state, and nation at 930AM. I’ll be at Ada’s Cafe at 830AM to talk about special education, disability, and whatever. Can’t make it? Aren’t local? Email me your suggestions, and I’ll share with our community.
BONUS TOPIC – Organizing in Santa Clara County… are we ready to get organized?
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To Organize or Not To Organize?
(don’t worry this will be reasonably quick)
As far as I can tell in the US, there are only 5 Democratic Clubs (party-affiliated groups that endorse candidates) in the US. None for the Republicans. 1 or 2 disability-focused 501c4s and PACs (public benefit organizations that can be politically active) and they are pretty small. There are quite a number of Democratic Party Caucuses (but they serve a different function… and I have thoughts).
If we want political change, we are going to have to play “with the big boys”. Fund-raise. Endorse. Volunteer.
In August, two good friends, F. and C. suggested that I help jumpstart a disability-focused organization here in Santa Clara County. A modest number of people signed up, but not enough to launch before the election season got crazy. If you are interested, let’s talk about it Wednesday at Coffee… or you can sign up online to be a charter member.
If you know of a disability group that I should be aware of, shoot me an email and I’ll work on a directory.
If you want to start a group or just talk about the issue… I’m here, I’ve been trying to understand the “political challenge” for disabled people in the US since 2017 (I’ll be sharing more in future issues).
Towards a Disability Agenda
“The arc of the moral universe is long, but it bends towards justice”
(If people work together and push on it) – suggested edit?
(constantly and stay vigilant) – suggested edit cont’d?
There are big issues: Moving Disability Services from Benefits (like welfare) to Insurance (like Medicare) that are going to be a long haul, but there is not time to start like the present. Also, ending Subminimum Wage, making Caregivers a viable and well-paid profession, creating public-private partnerships to fund Disability Housing.
And little ones: getting a local school board representative for our post-secondary programs, getting information on all the options for parents when things go wrong with IEPs to all special education parents (now we just need to get that on the web site, in each IEP package, and translated for all of our non-English speaking parents).
And some in between: Working with city and county law enforcement to ensure officers are annually trained on how to interact with disabled people, bring Non-Public-School (NPS) students and residential program students into programs within our county or at least our state, add after school programs for disabled students.
They all need to go “on the list”.
If you have success in your community, I want to know, so I can “borrow” your ideas here and elsewhere!
Where are our levers?
- Bureaucracy (local, county, state, national)
- City Council and School District Boards
- County Supervisors and County School Board Trustees
- County Sheriffs
- State Legislators
- US Representatives and Senators
- National Departments
- Independent Associations (the California School Board Association (CSBA) creates model regulations that virtually all state school boards use… we should work to make sure all of their policies are “disability-friendly”).
- Others?
Having an agenda gives us talking points to meet with people. “Bugs” to put in their ears. Some wins may be surprisingly easy… as much a matter of “asking” as anything. And some may be ridiculously hard.
Everything goes on the agenda.
No parking lot.
Some things will look different in different communities.
A success anywhere is a lever everywhere else.
The lack of HCBS services in 11 states is a powerful push on those states with long waiting lists. That just over 20 states are fully compliant with IDEA is leverage to push for compliance in those states that aren’t.
When you see better. It is easier to ask for better.
What are your issues? What do you want on the disability agenda?
What specific concerns do you have that you would ask a public official?
HOMEWORK – please email your issues to me and I’ll start pulling together an agenda. No matter how crazy-seeming, dream big!
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Riffs and Licks**
Selected disability news and commentary
Disabled deserve ease of access to services (OpEd)- have you written a letter to the editor? If you are willing, mail it to me, and we can put together a “Swipe File” to share … let’s make it easy to help get the word out.
The ‘safe place’ helping special needs children – they started with a sensory room and built a community center. Maybe we need a list of projects that others have completed as well? Here in Palo Alto, we have Magical Bridge who build inclusive playgrounds (and now our school playgrounds are steadily being made more accessible). Any cool projects in your community or that you’ve seen and been inspired by?
Employment challenges persist for people with disabilities – how do we convince employers to hire disabled workers? I’ve started trying to get my school district to at least report on the number of disabled workers they have and report on actual employment for their disabled graduates. And look into reaching out to local businesses to help lower barriers and fears. We need to get to the point where businesses WANT to employ disabled workers. Thoughts?
Creating Lasting Change Through Disability Inclusion: Interview with Caroline Casey of The Valuable 500 – Micro Disability Evangelism… what can we do locally, every day to not just make our own lives better, but the lives of those around us? Let’s get some of those easy victories to sustain us and build momentum.
Letter: SAVE Act burdens voting for disabled Americans – compounding inaccessibility leads to deep discrimination. If you are poor and disabled, you can’t afford to purchase a state ID or physically wait hours to get one.
She did not allow her disability to hold her back – (India) – what work are you willing to do to make change happen?
Tasmania Seeks First Disability Commissioner – (Tasmania) – to be clear here… Tasmania already has a cabinet-level Minister of Disability Services and now they are working creating a Disability Commissioner…. NOTED!
Missouri City leaders approve contractors for new housing rehabilitation program – prioritizing housing for disabled residents. How much disability-friendly housing does your community have compared to your disabled population? … and how about working to make both new and existing housing “Default Accessible”?
Quoted “The economics present a stark picture. Research indicates that supporting a person with moderate learning difficulties from age 16 to 64 typically costs the state £2-3 million. Helping these individuals achieve semi-independent living saves approximately £1 million per person, with an additional £170,000 saved when they access employment. By reducing charities’ capacity to provide these services, the NI increases risks, creating substantial long-term costs to achieve relatively modest short-term revenue gains.” – We need to start thinking and talking in terms of life-cycle costs (besides it being the right thing to do).
Regional parents call for disability education support for WA children– (Australia) – the tension between adequate support and segregated schools. If these programs are necessary, how do we minimize the distances involved? (We have some students who are in out-of-state residential programs… can we at least prioritize bringing them back to California or even closer to home?)
City urges parents of students with disabilities to apply for $500 grants before applications close Friday – I’m not sure about this, but how do we get charitable organizations to more systematically and effectively prioritize and support disabled people? One thing that has been on my mind is to help jumpstart participation in the ABLE account program (a matching fund or kick start participation with a $100 deposit?)?
It Shouldn’t Be This Hard to Vote When You’re Disabled – we need to flip all of our systems to be “Default Accessible”. Also, What It’s Like to Be a Poll Worker With a Disability
‘Just trying to be students’: Disability Advocates Committee requests accessibility reform – does your college or university or community have a Disability Advocacy organization? Let me know and I’ll put together a list or directory to help make groups easier to find or launch. “Default Accessible” strikes again. All projects with government funding need to start having “accessibility” written into their requirements… and then we need to work on “accessibility refits”.
Uncovering the New Accessibility Crisis in Scholarly PDFs: Publishing Model and Platform Changes Contribute to Declining Scholarly Document Accessibility in the Last Decade – obviously an academic paper! “Our findings reveal that less than 3.2% of tested PDFs satisfy all criteria, while a large majority (74.9%) fail to meet any criteria at all. “… if you get public funding, your papers should be “Default Accessible”!
Nearly Half Of Employees Fear Requesting Disability Accommodations, Data Shows – the article cites the costs of inaccessibility given demographic trends. “Other key takeaways were that more than half (55%) of job seekers cited mental health conditions as a top reason for needing accommodations at work. Forty-nine percent identified as having a learning disability, ADHD or other neurodiversity. Nearly 60% of respondents cited accommodations as critical to workplace success, yet more than half (56%) do not disclose their requirements and 77% said they would like to be able to assess what might be available to them using anonymous tools.” How do we raise the bar for accessibility in the workplace? Model standards? The cost of many accommodations is ZERO!
Wisconsin is considering boosting state-level special education funding “Help offset costs to districts in providing mandated special education services to students by increasing the special education reimbursement rate from about 32 percent to 75 percent in FY26 and to 90 percent in FY27 ($2B over the biennium) and restoring revenue limit indexing to inflation for the first time since 2009-10.” … what percentage of special education funding comes from your state? We need a report card! TARGET – 100% special education funding from the US and states.
Support for children and young people with special educational needs – UK audit report… a 16% employment gap after school. A damning assessment of SEND support (Special Educational Needs and Disabilities – everyone loves their acronyms)
Disabled women face ‘discrimination double whammy’ at work – (Wales) – because of course they do. How do we work this on all fronts? Businesses, government, culture, …
Nearly 1 in 5 US public schools short on special education teachers, lawmakers to hold hearings – the model has to change. ALL teachers should be accredited special education teachers. We need to migrate away from a 2-tier teacher certification program… and transition existing general education teachers into special education certified teachers.
What’s a Special Education Aide Worth? A $9,607 Raise, to the Average Teacher – “the average teacher is willing to trade a 21 percent raise for the full-time support of a special-education co-teacher and an 18 percent raise for a full-time special-education aide.” … clearly the model has to change.
Why should businesses design goods for better accessibility to people with disabilities? – in short, more money, more customers (oh, and, …the right thing to do!)
Election 2024: Disability — Comment: Two urgent issues candidates must address – and Election 2024: Disability — ‘It’s all empty promises. Why must we rely on charities?’ – (Ireland) – different country, same story… it looks like it is time for a new strategy.
‘It is immoral’: Australian investors warned about ‘cowboys’ promising unrealistic returns on disability housing – of course, there are going to be abuses…how do we get access to capital, provide a reasonable return to ensure investor participation… AND minimize fraud?
In Focus: Quality inclusive education (UNICEF) – “Children with disabilities account for 90 per cent of children in specialized boarding schools – a situation that violates their right to a family environment and exposes them to violence, abuse and neglect. ” (report highlights Roma and disabled children)
The pathologizing of disability: Why academic medicine must prioritize accessibility – problems with the accessibility of medical education as opposed to accessibility of medical care
** Suggestions welcome!
