Comprehensive data collection on accommodation implementation and retention rates would ensure accountability and help identify areas for improvement.
Showing posts with label Services/Supports. Show all posts
Showing posts with label Services/Supports. Show all posts
New article In Psychology Today
How Reasonable are Reasonable Accommodations at Work
Yes, 100% agree with these important points - the problems with reactive enforcement, power imbalances, "neurodiversity lite" etc. Thank you for being a powerful voice in favour of change!!
Another brilliant article Hari. I am sharing it widely too. The students in our autism certificate programs always love your pieces and refer back to them frequently in their reflections.
Another brilliant article Hari. I am sharing it widely too. The students in our autism certificate programs always love your pieces and refer back to them frequently in their reflections.
Disability is both a cause and consequence of poverty
"Disability is both a cause and consequence of poverty.
We're more that 2x likely to live in poverty than non-disabled people"
Disability and poverty are intrinsically linked, creating a vicious cycle that exacerbates the challenges faced by the disabled. This disparity stems from systemic barriers in education, employment, and healthcare. Disabled individuals often encounter limited job opportunities, workplace discrimination, and inadequate support services, significantly hindering their ability to secure stable and well-paying employment. According to the National Council on Disability, these employment challenges contribute heavily to the higher poverty rates among disabled individuals (National Council on Disability, 2017). The lack of accessible education further compounds this issue, as it restricts the skill development necessary for competitive employment.
Moreover, poverty can lead to or worsen disability, creating a continuous loop of disadvantage. Individuals living in poverty often have limited access to healthcare, resulting in untreated medical conditions that can lead to further disability. The financial strain associated with poverty can prevent people from obtaining necessary assistive devices or modifications, further diminishing their quality of life and ability to participate fully in society. The World Health Organization (WHO) emphasizes that this cyclical relationship underscores the need for comprehensive policies and programs that address both poverty alleviation and disability inclusion simultaneously (WHO, 2011). Breaking this cycle requires concerted efforts to create inclusive educational and employment opportunities, enhance social support systems, and ensure equitable access to healthcare and other essential services for disabled people. Investing in these areas not only improves the lives of disabled individuals but also fosters a more inclusive and equitable society, reducing overall poverty and promoting economic stability.
====
A plain language version
Disability and Poverty: A Tough Cycle
Disability and poverty are closely connected. This makes life harder for disabled people. Here’s why:
Education: Many disabled people don’t get a good education. This makes it hard for them to learn skills needed for good jobs.
Jobs: Disabled people often face problems finding jobs. There aren’t enough job opportunities, and some employers discriminate against them. Without good jobs, it’s hard to earn enough money.
Healthcare: Poor people often can’t afford good healthcare. This can lead to untreated health problems that cause or worsen disabilities.
Support Services: Disabled people need special support, like assistive devices or home modifications, but these can be expensive. Without money, they can’t get the help they need.
The National Council on Disability says that these problems make more disabled people live in poverty. The World Health Organization also says that we need to solve both poverty and disability issues together.
To break this cycle, we need to:
- Provide better education for disabled people.
- Create more job opportunities and stop workplace discrimination.
- Offer better social support services.
- Make healthcare and housing affordable and accessible for everyone.
When we invest in these areas, we help disabled people live better lives. This also helps reduce poverty and builds a stronger, fairer society for everyone.
2 versions of this post
An utter lack of accountability
Today there was a news article about a 7 year old autistic boy who went missing from his school during the school day. This was during a snowstorm, and he was found shivering and soaked in the middle of a busy traffic intersection by good neighborhood samaritans - and wearing just a thin t-shirt.
The school of course insisted that the child had been missing a mere 2-3 minutes, though investigations show him having walked through a patch of woods and being outside for over 35 minutes.
There had already been a plan in place as this autistic kid frequently eloped (a term used for kids who wander away). The police and parents were to be informed but neither happened. The good samaritans saw a kid darting about in traffic, stopped the traffic, rescued him, took him home and wrapped him in blankets.
Unfortunately the school district missing an autistic child during the school day is more common that you would think. As is the practice of gaslighting parents on the details (fear of being sued!!). The fear of being sued apparently more critically important than any safety concerns of disabled children.
When I was younger (~grade 3-4) I was in a classroom simply known as Room 20 in Dilworth Elementary. An autistic kid in my class did go missing for several hours. The school went into a lockdown as they searched for him. We were all asked to come indoors and stay inside.
Later that afternoon, an old man who lived a few streets away returned the kid as he had found him wandering around.
Of course, there was a lot of discussion in the class that day between the teacher and the classroom aides about how to downplay or not report this incident to the parents at all. I don't know the end result of how much the parents were told, but those overheard conversations about how to avoid revealing the truth about a missing child to its parents by educators are deeply disturbing.
How can we autistics fully put our trust and faith in an education system if we don't believe educators (the ones supposed to nurture and help us) will only will watch their own back and not your back.
https://www.youtube.com/watch?v=sJBoKDEUJy4
How Reasonable are Reasonable Accommodations at Work
Autistic employees with greater or more complex accommodation needs may be viewed as burdensome and resource-intensive, leading to exclusion from hiring, promotions, or even being the first to be laid off.
Happy Mother's Day
Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there,
on behalf of your extraordinary child.
You held me in your arms, oh mother mine
When I was a mere wrinkled newborn babe
You gazed at me with love and joy
Just as all young mothers do.
I walked my first step and said my first word
With pride, you watched my every move
You expected me to walk the predictable path
Just as all young mothers do.
You watched me slip and slide away
Wondering why I didn't do what other kids do
I stopped making eye contact with you
And stopped the spoken words too
A well of sadness entered your eyes
The smile not always in place
Perplexed and puzzled
Do I know this child of mine at all?
But, you rolled up your sleeves
You never gave up on me
You took the other fork on the road
The one without the map
You struggled and searched for solutions
You fought endless battles for me
You put your fists up and took a stance
And you never gave up on me
Lost in the desert of sadness
You changed your perception of things
You summoned new strength and courage
From the unfathomable deep
You changed your whole life for me
And, you never gave up on me
You coaxed every small victory out of me
Pride overflowed from your eyes
Steps of this extraordinary child
Of quite the extraordinary mom
You do the job of a dozen people
And you never gave up on me
Exhausting is the journey you're on
Exhilarating only some of the time
I am not the typical child you thought you'd raise
New challenges lie in the path every day
To the extraordinary mom who holds my hand
And who never gave up on me.
------------------------------------------------------------------------
I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.
I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.
This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.
Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.
Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.
Parents, Yours is truly a dedication of a lifetime. Thank you.
April 30 is Autism Seniors Day
Recognizing that autism will not magic away in old age.
Also the fact that the thousands and thousands of young autistic adults of today will be the autistic seniors of tomorrow.
What are the issues we will face as with both autism+Old Age?
What kind of supports will we need?
Hybrid is an easy accommodation
To give context to the above post, Sascha was one of the students in my Autism DeCal Class at UC Berkeley. I was happy to be able to accommodate her request of attending the class remotely that semester and extending that hybrid option to all the students in the class as well. Hybrid is such a simple and basic accommodation really, especially in a post pandemic world where zoom became a very viable option of attendance.
=====
And to hark back to another teacher who paved this way for me was Instructor Martha Oral (English 1B) in my community college when I was about to drop my fall semester as I would be unable to attend due to health reasons. Martha on her own initiative talked to the Tech support and organized Cisco Webex on her laptop which one student monitored during her class so that i could attend that class remotely. This was before the pandemic made Zoom an everyday word.
Autism after 21 Day
Does Autism Magic away in adulthood?
Where are there pediatric Autism Clinics in all hospitals but no Adult Autism Clinics?
Why is there a Services Cliff at Age 21, when any services (even if they are inadequate) received during childhood comes to an abrupt end with no replacement or continuation of supports and services.
IDEA protection end, with no equivalent replacements and supports
There is URGENT NEED for translatable solutions and supports for the ever increasing numbers of autistic adults.
End of IDEA protection afforded during the Ed years. The yellow school bus stops coming.
- Approx 1/3 of autistics who got access to mainstream ed are put on a diploma track in high school and have the opportunity to make their way to 2/ 4 college, at age 18. They join the swelling ranks of other late-dx autistics and face challenges and barriers that come with adulthood.
- Almost 2/3 of autistics who are dx in childhood remain in the special education all through their ed years.
- At age 18, they get another 4 years of what is called Post Secondary Program; located either in segregated facilities/schools, in the school district itself or more recently as programs run on university campuses so they happen in the same space as college-aged peers; though the programming may be different. At the end of the programming, they receive a Certification of Completion.
- IDEA protections end at this point. This is also the services cliff where all previous services.
- Their options are a series of adult day programs, upto age 50 and then 50+ years. These day programs again have a range of quality - from real job coaching to mere babysitting but there is far less state oversight of quality. There is a shortage of good programs. And as usual, much like special education itself, programs only want the "easy autistics". So where do the rest go?
- This is a HUGE problem, as families are suddenly handed back their adult child and told to go figure out what to do, from caretaking to daytime programming to housing and staffing, funding to figuring out pretty much everything. Many YA autistics have signifiant medical and other communication needs which can get aggravated with age with no real supports. The onus pretty much falls to the family to figure out what to do.
- The challenges faced compound for autistics who have higher support needs yet had somehow managed to access mainstream education and even make it to college. Its like straddling two world, as they face barriers in both world - neither of which knows how to support you or wants to include you. Its almost assumed you must be in one of the other other. I have to question this assumption. Instead why can we find solutions?
- Some of these barriers and challenges are unique to each space while others are common across the spectrum. The point being that adulthood in autism is not easy and we need to be thinking of solutions that helps each group and across the board.
ASA Press Release
I get quoted in this press release.
The Autism Society of America is taking direct action at a national level on multiple priority issues that impact Autistic individuals. In particular, the organization is highlighting the importance of passing legislation that provides additional funding for home and community-based services (HCBS) and addressing employment disparities. This includes the Better Care Better Jobs Act and the HCBS Access Act.
“The current system of supports and services are set up such that there can be a sudden stop in services for the most absurd of reasons. Such policies need to change,” states Hari Srinivasan, an Autistic student at Vanderbilt, and member of the Autism Society’s Council of Autistic Advisors. “I find myself in this strange situation where the PhD stipend makes me ineligible for SSI, which in turn is linked to all state-funded disability supports and disability health insurance that I have relied on all my life. My significant Autism challenges and required supports, did not magically go away in graduate school. It is like a financial penalty on the disabled person to want to aspire for higher education and the pursuit of the American Dream.”
I want to relate this back to what the late Judy Heumann said in her 2019 interview with me for the Daily Cal [post on unedited longer interview], [Daily Cal article]
Informal Removals
This is so deja vu for me.
Never mind even the struggles involved in getting access to general ed classrooms,
even special education classrooms only want the Good Patients.
=================
https://www.nytimes.com/2023/02/09/us/students-disabilities-informal-removal.html?fbclid=IwAR36fyuIXrWPV7QZMxdeHt_HPxYJy9___BwxYS0k7YIEKBarCdHdrxEAW4U
"During her son’s elementary years, Ms. LaVigne was called almost daily to pick him up hours early because he was having “a bad day.” By middle school, he was only attending an hour a day..."
"During her son’s elementary years, Ms. LaVigne was called almost daily to pick him up hours early because he was having “a bad day.” By middle school, he was only attending an hour a day..."
"The removals largely escape scrutiny because schools are not required to report them in the same manner as formal suspensions and expulsions, making them difficult to track and their impact hard to measure."
"continuation of the practice sends a terrible message to students and to school communities about which students deserve an education.”
They Can and They Will
On my facebook feed
Well said Paul - "... have a child or young adult with autism -ANYTHING is possible! Don’t let any teacher , family member “ friend” or anyone say your child can “ never” do x y or z . They can , and they will."
You Never Gave Up on Me
Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there,
on behalf of your extraordinary child.
You held me in your arms, oh mother mine
When I was a mere wrinkled newborn babe
You gazed at me with love and joy
Just as all young mothers do.
I walked my first step and said my first word
With pride, you watched my every move
You expected me to walk the predictable path
Just as all young mothers do.
You watched me slip and slide away
Wondering why I didn't do what other kids do
I stopped making eye contact with you
And stopped the spoken words too
A well of sadness entered your eyes
The smile not always in place
Perplexed and puzzled
Do I know this child of mine at all?
But, you rolled up your sleeves
You never gave up on me
You took the other fork on the road
The one without the map
You struggled and searched for solutions
You fought endless battles for me
You put your fists up and took a stance
And you never gave up on me
Lost in the desert of sadness
You changed your perception of things
You summoned new strength and courage
From the unfathomable deep
You changed your whole life for me
And, you never gave up on me
You coaxed every small victory out of me
Pride overflowed from your eyes
Steps of this extraordinary child
Of quite the extraordinary mom
You do the job of a dozen people
And you never gave up on me
Exhausting is the journey you're on
Exhilarating only some of the time
I am not the typical child you thought you'd raise
New challenges lie in the path every day
To the extraordinary mom who holds my hand
And who never gave up on me.
------------------------------------------------------------------------
I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.
I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.
This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.
Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.
Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.
Parents, Yours is truly a dedication of a lifetime. Thank you.
Supports, Skills & Society - Integral Adult Autism Conference
Keynote at this conference.
https://integralautism.org/presenters
All that's wrong with this letter from RC
All Indians MUST necessarily know Hindi,
ALL THAT’s WRONG WITH THIS LETTER on the Self-Determination Program from the CA Department of Developmental Services.
Someone at DDS decided that because I have an Indian origin last name.
1. My mother tongue must be HINDI; its not.
2. I MUST KNOW how to read the HINDI devanagari script.
3. An automatic presumption on the part on the Hindi-speaking person at DDS who came up with this plan, that every person of Indian origin knows Hindi.
Hindi is predominant in specific parts of the India only. Even if half the country knows Hindi, it marginalizes the remaining 650 million Indians in India who don't use it; the southern states being an example. There are 22 official languages in India…
I found this very insensitive; almost reflective of the autistic/disabled experience where neurotypicals/nondisabled will assume that theirs’ is the only experience that counts.
Why are they making information on disability services more inaccessible here in the CA and wasting taxpayer money in the process. How many trees died in printing out thousands of these letters, how many mailman hours were wasted in the delivery these letters.
Who got to decide this in CA; given its claim of being a more disability friendly state. This is really the last thing I expected in California.
THIS IS WRONG!!
Together We Can Learn Conference
I was Keynote Speaker
https://familiestogetherinc.org/2021twcl/#hari
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