Friday, April 19, 2019

Weekly Disability Reading List

Closeup picture of a monthly calendar page

Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

Things to Never Say (or Do) to Your Disabled Co-worker
Imani Barbarin, The Muse - April 14, 2019

Good advice for making all workplaces more friendly for people with disabilities.

90% Of People Think They’re Helping Society By Challenging People Who Don’t Look Disabled, Says Study
Katie O’Malley, Independent - April 15, 2019

Policing who is and isn’t disabled is very common, and one of the most constant frustrations for people with disabilities, especially invisible disabilities.

‘Game Of Thrones’ Finds Fans Among Disability Rights Activists, Too
Neda Ulaby, National Public Radio - July 10, 2017

Whether you’re a fan of this show or not, it’s worth noting how many different kinds of disabilities and disabled characters are in it, and not just in background roles.

Friday, April 12, 2019

Weekly Disability Reading List

Closeup picture of a monthly calendar, focused on a single week

Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

How A Devastating Hate Crime Provoked Sinéad Burke’s Powerful New Campaign
Sinéad Burke, Vogue - April 11, 2019

An incredible story of outrageous behavior, and a little person’s effort to change youth thinking about people with disabilities.

Busting the myth that autistic people lack empathy: the community speaks out
Ellen Seidman, Love That Max - April 10, 2019

It’s Autism Awareness Month, but there’s quite a bit of debate of what, exactly, people should be aware of in regard to autistic people. Quite often, this “awareness” amounts to inflating fear of an “epidemic,” or how “broken” autistic people are. But autism is an easily misunderstood set of diverse conditions. And while it poses numerous challenges, some quite profound, listening to what autistic people say and really thinking about what they do is an important first step towards understanding and acceptance.

One of us was a pain patient saved by opioids, the other was addicted to them. We both deserve a solution
Ryan Hampton and Kate M. Nicholson, Los Angeles Times - April 3, 2019

This is a really tremendous and balanced look at the intersection of battling the opioid crisis and the harm to people with genuinely chronic pain that is already happening as a side-effect of the opioid crackdown. Absolutely essential reading.

Friday, April 5, 2019

Weekly Disability Reading List

Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:

New content is added every day.

Tim Gilmer, New Mobility - April 1, 2019

This is the second part in a New Mobility magazine series on people with disabilities in the medical profession. The first piece, on doctors with disabilities, is here.

Erin Ivory, WGN 9 Chicago - March 28, 2019

It’s easy to dismiss this as just a cute story, but it’s an example of how people with disabilities can think about their impairments in a completely different way. This is positive thinking, with a mischievous twist.

Melissa Blake, Rooted In Rights - March 26, 2019

Dr. Phil may have been trying to shed light on some of the potential difficulties of relationships where one person is disabled and the other is not. But the way he made his case was incredibly ignorant, and also harmful to anyone with disabilities struggling with their self image and future relationship possibilities.

Wednesday, April 3, 2019

NYAIL Summary of NYS Budget Results

Closeup photo of computer keyboard with one large key labeled "Updates"

The following is a summary of the finished New York State Budget, from the New York Association on Independent Living ...

The budget was passed over the weekend. Now that it has passed, I want to share some updates this morning on our top priorities.

IL funding: The statewide network was allocated a $500,000 funding increase. Clearly this falls short of what we were seeking, but given the difficult budget year, it was an accomplishment to receive an increase at all. Further, now that we have strong support from both Education Chairs, we have momentum we can build on next year.

Consumer Directed Personal Assistance (CDPA) program:

The final language broadens who can be a FI from the proposed language, which limited it to ILCs and FIs who were in operation prior to 2012. It does still include ILCs in the language though as entities who can be FIs. Contracting will be directly with the Department Of Health, as opposed to LDSS offices.

The bill did include some consumer protections, including creating a workgroup, to be formed by May 15th, to do the following:

- best practices for the provision of fiscal intermediary services;
- inform the criteria for the application to be a fiscal intermediary;
- identify whether services should differ for different groups of consumers;
- identify what criteria should be used in reporting; and
- develop transition plans for consumers who may need to transition to a different fiscal intermediary.

As for our primary concern, which was changing reimbursements to a per member per month (PMPM) model, the bill does not address this. Advocates were hoping it would be part of the workgroup’s charge, but it is not. There is apparently a plan to move forward with a PMPM model though, which the Executive already had the authority to implement without approval from the legislature. The plan is for rates to be banded, meaning there is a low rate for people who need 1-4 hours; a higher rate for consumers who need more hours; and a high rate for consumers who need more than 96 hours. We will be confirming those rates with legislative staff today and sharing this with the FIs in our network.


Access To Home level funded at $1 million. The funding increase for this program was to come from the Mortgage Insurance Funding (MIF), which did not turn out to have adequate funding to support our increase. We will need to work harder on ensuring the Senate and Executive understand the necessity of providing funding for home modifications.

Office for the Advocate not included in final budget. Though we had strong support in the Senate, we understand there were concerns from the Assembly and Executive which we are working to find out more regarding.

We will send a more thorough update shortly.


Here is an overview of how the rest of our priorities on our Budget DPA did in the final budget.

Health / Medicaid:

Spousal refusal protected! People who have a spouse or child who become sick or disabled and require Medicaid will not have to divorce or institutionalize their loved ones just so they can get the care they require!

Prescriber prevails protected! A doctor will be able to determine the best course of treatment for their patients, as opposed to the managed care organization.

Global cap extended.

The final budget did not include a community-based high needs rate cell or risk adjustment, as proposed by the Assembly and Senate.

The National Diabetes Prevention Program was included.

New York Connects received a $1M increase over two years.

Long Term Care Ombudsman Program level funded.


Early voting funded! The budget includes $25M to cover the costs associated with implementing early voting. $14.7M will go toward purchasing software necessary software. This includes electronic poll books, as well as on-demand ballot printers and cybersecurity protections. An additional $10M will reimburse county Boards of Elections for costs associated with implementing early voting. Counties would not have the funds necessary  to implement early voting, so this is big.


I already reported that a person’s lawful source of income is now a protected class in NYS Human Rights Law and Access To Home was level funded. As for our third housing priority, the Visitability Tax Credit was not included.


Small Business Tax Credit not included.

Meghan Parker
Director of Advocacy
New York Association on Independent Living
155 Washington Ave, Suite 208
Albany, NY  12210
Phone: 518-465-4650
Fax: 518-465-4625
Visit Our Website:

Like us on Facebook!

Thursday, March 28, 2019

The Stigma of Being Disabled Due to Invisible Illnesses

By Allison Jonergin

Multiple invisible illnesses have combined to disable me. In the order in which I was diagnosed, I have:

Asthma*: a lung disease causing shortness of breath, wheezing, tightening of the chest, and coughing

Endometriosis*: a disease of the reproductive system in which tissues making up the endometrium are found outside of the uterus on other organs, causing pain, infertility, abnormally heavy or painful periods, and digestive distress

Irritable Bowel Syndrome (IBS)*: a colon disorder characterized by abdominal pain, constipation, diarrhea, and food intolerances

Gastroesophageal reflux disease (GERD): a recurring malfunctioning of the lower esophageal sphincter, causing heartburn and the backward flow of the stomach’s contents into the esophagus

Temporomandibular Joint Dysfunction (TMJ)*: a disorder wherein the temporomandibular joint doesn’t move properly, causing pain and jaw locking

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)*: a disease characterized by debilitating fatigue not relieved by rest; other symptoms include sleep disruptions, cognition problems, pain, and the worsening of symptoms following mental/physical activity

Chronic Migraines*: severe headaches on more than 15 days each month, often accompanied by nausea and sensitivity to light and sound

Fibromyalgia*: a disorder featuring muscle tenderness and pain, malaise, fatigue, mood changes, and digestive and cognitive symptoms

Generalized Anxiety Disorder*: an anxiety disorder characterized by excessive worrying or fear, fast heartbeat, tiredness, irritability and problems with sleep

Hypothyroidism: a condition in which the body doesn’t produce enough thyroid hormone, causing fatigue, muscle weakness, and cold intolerance

Degenerative Disc Disease*: pain and muscle spasms caused by osteoarthritis of the spine

Depression*: a mood disorder presenting with chronic sadness, suicidal ideation, fatigue, and changes in sleeping and eating habits

You can see none of these. I’m not bound to a wheelchair or using the assistance of a guide dog. I don’t wheel an oxygen tank behind me.

There are no cures for any of these illnesses.

Still, some ask, “Surely you don’t consider yourself disabled?”

Guest blogging logo showing a stick figure writing with a giant penI didn’t wake up one day and decide to identify as a disabled person. I spent a long time in denial before I accepted the truth.

Others ask, “You’re not just going to sit around collecting disability, right?”

In our capitalist society, it’s taboo to stay at home, unemployed.

“What do you even do all day?” the less blunt inquire.

I’m not able to enjoy what others perceive to be one long vacation.

I don’t question how productive you are on your days off. I hope you’re able to spend time doing things that give you life and lighten the weight of your worries.

It is hard work, physically, mentally and emotionally to live a disabled life due to invisible illnesses. I spend most of my day babysitting my illnesses, like a pack of children after a birthday party. One is getting sick in the bathroom. One has been up all night. Another won’t stop crying, giving me a headache. Yet another whines of fatigue, wanting to sleep in all day. One can’t eat this food or that. The one next to him says she’ll flip out if I don’t serve her this food and that other one too. Another is pinching me all over.

There’s no coffee, no time-out, no day off. There’s no killing any of the kids. I must care for each of them tenderly, loving them back to their sweet selves, if only for a moment. I’m exhausted before the day is half over, feeling overcome by what feels like the flu.

A bad morning doesn’t have to ruin my day, though. Once I give myself permission to start over with different expectations, the day is mine again to conquer.

*May cause additional symptoms

Allison Jonergin is a SUNY Plattsburgh alumna and North Country native. She has fibromyalgia, CFS/ME and endometriosis. She also deals with irritable bowel syndrome, anxiety, depression and migraines.

More Blogs by Allison Jonergin:

Friday, March 22, 2019

Weekly Disability Reading List

Closeup picture of a monthly calendar, focused on a single week

Links to three disability-related articles shared last week on NCCI social media. You can always visit NCCI on Facebook and Twitter at the following links:


New content is added every day.

Even in Grief, I Still Have Pride
Robyn Powell, New York Times - March 21, 2019

A lot of people still find it hard to understand how the difficulties, hardships, and stigma of disability are mixed with pride and solidarity in actual disabled people. This article goes a long way towards explaining.

Why We Turned Down Dr. Phil
Squirmy & Grubbs - March 14, 2019

It’s very tempting to accept whenever public visibility is offered to disabled people. But it matters every single time how we are portrayed, and the messages our presence are meant to convey. Some “opportunities” aren’t worth it.

First Data On Wheelchair Damage By Airlines Released By DOT
John Morris, Wheelchair Travel - March 14, 2019

The numbers may or may not look staggering on paper, but each “mishandled” wheelchair represents massive inconvenience, physical risk, and huge expense. Hopefully, having records of airline performance will help them improve.

Friday, March 15, 2019

Act Today To Save CDPA!

Action Alert in bold white letters on a dark red background

The following Action Alert comes from the New York Association on Independent Living:

We all know by now that The Governor’s proposed budget makes drastic changes to the Consumer Directed Personal Assistance (CDPA) program that will put the whole program at risk! Thankfully, the legislature heard you, and they both rejected the Governor’s proposal in their one-house budget responses. This is huge, as it brings us closer to keeping the Governor’s incredibly harmful proposal out of the final budget!

The Budget Conference Health Subcommittee is now meeting. They will be making tough decisions over the next week or two about what they can afford to support. Anything can happen over the next week or two, so it is essential that the members of this committee hear from you!


Contact the members of the Senate and Assembly Health Subcommittee! Thank them for their support in their budget response, and urge them to stay strong throughout final budget negotiations in their support to save CDPA!

Assembly Health Subcommittee:

* Assembly Member Gottfried 518-455-4941 or email
* Assembly Member Cahill 518-455-4436 or
* Assembly Member Bronson 518-455-4527 or
* Assembly Member Davila 518-455-5537 or
* Assembly Member Fernandez 518-455-5844 or
* Assembly Member Barnwell 518-455-4755 or
* Assembly Member Raia 518-455-5952 or
* Assembly Member Byrne 518-455-5783 or

Senate Health Subcommittee

* Senator Rivera 518-455-3395 or
* Senator Salazar 518-455-2177 or
* Senator Carlucci 518-455-2991 or
* Senator Montgomery 518-455-3451 or
* Senator Thomas 518-455-3260 or
* Senator Gallivan 518-455-3471 or
* Senator Jacobs 518-455-3240 or

You can also contact our North Country Legislators and ask them to support the Senate and Assembly provisions on Consumer Directed Personal Assistance, (CDPA)

* Assembly Member Billy Jones 518-562-1986 or
* Senator Betty Little 518 561-2430 or