Friday, June 29, 2018

Three Links This Week

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

Links to three articles shared in this week’s NCCI social media. You can visit NCCI on Facebook and Twitter at the following links:


This week - June 23-29, 2018:

Callum Borchers, Washington Post - June 21, 2018

Charles Krauthammer, who passed away this June, was a well known political columnist, but his disability was less widely known. The writer of this article says that while he rarely spoke of his disability, his example did not go unnoticed by at least some disabled writers.

Marketplace, National Public Radio - June 22, 2018

A radio series on the economic forces that shape the disability experience.

Ari Ne’eman, Sometimes A Lion - June 25, 2018

The former head of the Autistic Self Advocacy Network, (ASAN), discusses how disability issues affect his politics and voting decisions.

Friday, June 22, 2018

Three Links This Week

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

Links to three articles highlighted in this week’s NCCI social media. You can visit NCCI on Facebook and Twitter at the following links:


This week - June 16-22, 2018:

Gemma Tedrich, NCCI Blog - June 22, 2018

This is the first in a series of monthly guest posts on the NCCI blog. For more information on guest blogging, click here.

Carrie Ann Lucas, Disability3 - June 17, 2018

Discussing the weight of responsibility put on people with disabilities to arrange and justify their own accessibility.

Susan Senator, Psychology Today - June 14, 2018

A parent explores the nature of well-meaning condescension.

Living For The Small Things

Gemma Tedrich
Guest Blogger
My sophomore year of college was when I felt at my lowest. I had gone off my medication after becoming frustrated with the side effects and began drifting away from my friends. I dreaded calling my parents for fear I would upset them if I admitted how bad I felt, and getting to class felt impossible most days. My depression had drawn me into a dark place, and while I was familiar with the ups and downs that came with my mental illness, it felt at times I had nothing significant to keep me going in life. I was isolated from those who might give me support and unsure what I would be able to do with my degree when I got it, or if I would even be able to graduate. Everything felt uncertain and bleak. 
Guest blogging with picture of a white 3 dimensional stick figure holding writing with a giant penI remember sitting in my dorm room and pondering why I kept going. Why was it that I kept fighting through the pain I was feeling when everything felt like an uphill battle? It took me a good deal of thinking to answer this question, but when I did I laughed out loud. When It came right down to it, the reason I was alive was because my favorite web series hadn’t ended yet, and I wanted to see how turned out. 
It sounded ridiculous to admit it to myself, because what was keeping me alive wasn’t some sought after life goal like graduating or the support of someone I cared about. It was something small and insignificant in the grand scheme of things. It was just a web series. But the more I thought about it, the more I realized how much the small things in my life had been helping me. When deep in my depression, I couldn’t focus on the bigger picture of life. Yes, I wanted to graduate and get a great job doing somewhere that I loved, but those concepts felt so unreal and far away from me on days when even getting up out of bed or showering felt like an impossible task. But it was easy for me to look forward to show that I liked. It was something to look forward to that wasn’t a distant idea that would happen years from now. Maybe it was small, but it helped me look forward to being alive. 
The web series finally ended, but by then I had already made a short list of little things I was look forward to. There was a video game coming out in a couple of months that I really wanted to try, a local band was playing a show next week that I really wanted to see, the dining hall was having my favorite dish tomorrow and I couldn’t miss out on that. They were all small things, but they kept me going while I figured out what I needed to do to feel better. 
Eventually I told my parents what was going on. I started up on a new set of medication and realized that therapy was an important part of dealing with my depression. As I began to feel better I began to hang out with my friends more, and no longer being isolated helped my mood greatly. But I wouldn’t have gotten that far without those small things I looked forward to. It doesn’t matter how small it may be, or how ridiculous it may sound, if you have little things that you look forward to, make a list of them. They can help get you through tough times and make your day a bit better.

Gemma Tendrich is currently a student and SUNY Plattsburgh where she studies Writing Arts and Literature. Originally from New Jersey, Gemma now calls Plattsburgh New York home. She has experience living with depression and anxiety as well as a learning disability and tries to incorporate aspects of these experiences into what she writes.

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This is the first guest blog in what will be a monthly series. Each month NCCI will choose up to 2 submitted blog posts from North Country writers on disability-related topics. This is a paid opportunity. Click here for more information.

Saturday, June 16, 2018

Two Action Alerts

Action Alert in bold white letters on a dark red background

NCCI has received action alerts on two important disability issues, Electronic Visit Verification, which affects the functioning and rights of home care users and aides … and Source Of Income Discrimination, focused on an effort in New York State to prohibit discrimination on the basis of your source of income, which greatly affects lower income people’s ability to rent housing. Details and action steps are below, taken directly from the two action alerts:

Electronic Visit Verification

Support a delay of Electronic Visit Verification (EVV)!

We expect Congress may consider a delay as a standalone bill early next week, so we’re asking you to take action now.

Electronic Visit Verification (EVV) is a tracking system that requires electronic verification of when a person receives Medicaid-funded personal care or home health services. 

EVV has the potential to invade the privacy of people with disabilities, limit their independence and community access, and lead to cuts in services.

A delay is an important first step and will give advocates more time to work with Congress, CMS, and the states to address the significant concerns with EVV and its potential impact on people with disabilities. 

Action:

As a first step, Congress should pass an at least one year delay for implementation of EVV.  Please contact your House Members today!

Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY) and ask to be connected to your Representative.  Ask your House Member to pass an at-least-one-year delay for implementation of EVV. 


Message to House Members:

Please support a delay to Electronic Visit Verification (EVV) implementation.

Too much is at stake to rush the process: the independence, privacy and quality of life of people with disabilities who rely on these services, as well as the stability of disability supports and services. There has been little stakeholder input, despite EVV affecting personal aspects of peoples' lives. EVV will impact the privacy and independence of people receiving services, as well as the workforce that delivers those services—but the extent of these impacts remains unclear.  A delay will give us more time to address problems.



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Source Of Income Discrimination

NYS Assembly Leadership must hear from you ASAP in order to bring A.10610 to the Assembly floor for a vote! We need every coalition member to CALL, EMAIL, and TWEET at Speaker Heastie, Majority Leader Morelle, Chairwoman Peoples-Stokes (Government Operations Committee), and Assemblyman Weprin (Bill Sponsor) TODAY! 

Contact information, talking points, a draft email, and social media posts are included below that you are welcome to use. 

With the passage of A.10610, it will be unlawful to deny housing to elderly citizens, persons with disabilities, domestic violence survivors, homeless individuals, children, ethnic and racial minorities, veterans and others, when they attempt to use some form of government assistance or non-wage income to pay their rent.

Additional Actions:

Like us on Facebook and follow us on Twitter, and then share and retweet our posts and tweets! Forward this email to any other groups that you think would be interested in supporting A.10610. Thank you for action on this important matter! Please let me know if you have any questions.

Best, 

Aliya Brown 
Phone: 212.284.7214
Email: banincomebiasny@gmail.com 

LEADERSHIP CONTACTS

Speaker Carl Heastie, 718-654-6539, heastic@nyassembly.gov, @CarlHeastie (Twitter) Majority Leader Joseph Morelle, 585-467-0410, morellej@nyassembly.gov, @JoeMorelle (Facebook), @JoeMorelle (Twitter) Chairwoman Crystal Peoples-Stokes, 716-897-9714, peoplec@nyassembly.gov, @CPeoplesStokes (Facebook), @CPeoplesStokes (Twitter) Assembly Member David Weprin, 518-455-5806, WeprinD@nyassembly.gov, @DavidWeprin (Facebook), @DavidWeprin (Twitter)

TALKING POINTS

My name is [Insert Your Name] from [Insert Your Organization] and I am a member of the BanIncomeBiasNY coalition. I am calling to urge [Insert Assembly Member] to bring bill A.10610 up for debate and to vote on it by June 20th. A.10610 would make it illegal for landlords to deny housing to individuals who use non-wage income to pay for their housing. This bill is a huge priority for myself and my organization, and is an important step towards ending source of income discrimination in New York for elderly citizens, persons with disabilities, domestic violence survivors, veterans and others.

DRAFT EMAIL 

Dear Assembly Member, 

As a member of #BanIncomeBiasNY, a coalition working to end source of income discrimination in housing, I am reaching out to encourage you to bring bill A.10610 up for debate and to vote on it by June 20th. 

With the passage of A.10610, it will be unlawful to deny housing to elderly citizens, persons with disabilities, domestic violence survivors, homeless individuals, children, ethnic and racial minorities, veterans and others, when they attempt to use some form of government assistance or non-wage income to pay their rent. This is critical to create statewide protections for individuals and families who need rely on housing and/or income assistance.  To learn more about this source of income discrimination, please click here.

Thank you for your consideration of this important issue. 

[INSERT SIGNATURE BLOCK]

DRAFT SOCIAL MEDIA

The lack of source of income protections in New York restricts #housing choice, concentrates poverty, stifles mobility, & drives inequities in other areas of our lives. It's time to #BanIncomeBiasNY & pass A.10610 today! [INSERT ASSEMBLY MEMBER HANDLE]

576k NY seniors, persons with disabilities, domestic violence survivors, veterans, & others are at risk of #housing discrimination because of their source of income. Please fix this today & pass A.10610! #BanIncomeBiasNY [INSERT ASSEMBLY MEMBER HANDLE]

Protect some of our most marginalized populations, including the elderly, ethnic & racial minorities, & veterans, by passing A.10610 & making source of income discrimination in #housing illegal! #BanIncomeBiasNY [INSERT ASSEMBLY MEMBER HANDLE]

We've made huge strides in protecting people from #discrimination when they are renting, buying, or securing financing for any housing. However, we still have some work to do before we have #FairHousing for all. Pass A.10610 & #BanIncomeBiasNY today! [INSERT ASSEMBLY MEMBER HANDLE]

Source of income #housing discrimination is a civil rights issue throughout NYS! It concentrates poverty & reinforces residential segregation among our most vulnerable communities. It's time to BanIncomeBiasNY! Pass A.10610 today! [INSERT ASSEMBLY MEMBER HANDLE]

Friday, June 15, 2018

Three Links This Week

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

Links to three articles highlighted in this week’s NCCI social media. You can visit NCCI on Facebook and Twitter at the following links:


This week - June 9-15, 2018:

Cynthia Gorney, 99% Invisible Podcast - May 22, 2018

Jesse Thorn, Bullseye Podcast [YouTube Clip]- June 4, 2018

Episodes from two separate audio podcasts that describe some of the founding personalities and ideas of the Independent Living and Disability Rights movements.

Karin Hitselberger, Rooted In Rights - June 7, 2018


What happens when two worthy social movements clash.

Thursday, June 14, 2018

Upcoming Focus Group on ACCES-VR Services


You are invited to a meeting to talk about your experience with ACCES-VR services and how they could be better.

In Plattsburgh:

North Country Center for Independence (NCCI)
80 Sharron Avenue Plattsburgh, NY
Tuesday, June 26 12:00 Noon to 2:00 pm

There will be two other forums in the North Country:

In Massena:

Maximizing Independent Living Choices (MILC)
156 Center Street Massena, NY
Wednesday, June 27 5:00 pm to 7:00 pm

In Watertown:

Northern Regional Center for Independent Living (NRCIL)
210 Court Street, Suite 107
Watertown, NY
Thursday, June 28 12:00 Noon to 2:00 pm

Refreshments and light meal will be available.

To let us know you will be attending, call the Potsdam Institute (PIAR) at: 1-888-419-2698 (toll free) or by email at: PIAR@potsdam.edu at least two days before the meeting.

Let us know as soon as possible if an accommodation, such as sign lan- guage interpreter, will be needed.
Seating is limited.

This meeting will be hosted by Dr. J Patrick Turbett and his staff from the Potsdam Institute for Applied Research (PIAR) at SUNY Potsdam, on behalf of the NYS Education Department, ACCES-VR, Adult Career and Continuing Education Services, Vocational Rehabilitation.

Tuesday, June 12, 2018

Ombudsman Action Alert - 6/12/18

Closeup picture of a definition for the word Advocacy, with a green highlighter pen marking the word

June 14, 2018 UPDATE: ON THE ACTION ALERT EXPLAINED BELOW. This was also received from the New York State Ombudsman Program.

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Good morning everyone. Last evening we were informed of the progress on our request for our bill being introduced in the Senate. The bill has now been introduced by Senator Dilan with a bill number of 9002. Due to this progress, we are now asking for you to change your request when you call your local senators. Instead we would like you to reach out to your senators and request that they support bill number 9002, regarding the long term care ombudsman program. If you have already contacted your senators offices please reach out again and inform them of the progress of the bill being introduced by Senator Dilan and request their support of the bill during this session. I apologize for the quick change in this request, however time is of the essence as session ends 06/20/18. If you have any questions, please contact your ASO for assistance. Thank you for your actions on this request.

Claudette Royal
New York State Ombudsman
NYS Office for the Aging

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This call for advocacy was received from the New York State Ombudsman, who directs New York’s Long Term Care Ombudsman Program. NCCI runs the Ombudsman Program for Clinton, Essex, and Franklin Counties, New York. It’s important we act on this by Friday, June 15, 2018.

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I need your assistance in gaining passage of legislation that would conform NYS Elder law provisions governing LTCOP with the new regulations issued by the Feds governing the operations of LTCOP.

Enactment of the bill is important since failure to be in compliance with the new Federal program requirements could jeopardize overall Federal program funding for LTCOP and all NYSOFA programs. A letter was received from ACL in response to the question asked by the Senate regarding the impact of not passing this bill. Legislation has been introduced – at my request as well as by Assemblywoman Lupardo and Senator Serino - A.10161, Lupardo / S. 7975, Serino - that would accomplish this goal.

The Assembly and Senate both have made changes to their bills and the Assembly decided to  introduce a new bill (A. 11050, Lupardo)- which is in the 2nd attached file, for procedural reasons and for the purpose of helping the process advance; that reflected changes that both houses were seeking.  All of the changes are acceptable to the Office of the State Long Term Care Ombudsman.

There now needs to be a companion bill in the Senate that matches Assembly bill (A.11050). 

THE ASK -

We are requesting that you contact your State Senator [Sen. Elizabeth Little: (518) 455-2811]. Tell them your name and that your organization provides a valuable service to their constituents who live in nursing homes, adult care facilities and family type homes.

This worthwhile program is helping address quality of life issues for these individuals, by advocating on their behalf.

The proper and lawful operations of this program by the Federal Administration on Community Living (ACL) by NYS is a top priority. Let them know that failure by the Senate to introduce and pass this bill potentially could jeopardize funding for LTCOP which ACL has put in writing;  share a copy of the letter which is the in the first attached file. 

NEXT -- SPECIFICALLY ask that your Senator reach out to their colleague Senator Serino, the Senate Chair of the Aging Committee, to request that she introduce  a companion bill to A.11050, Lupardo, and then work to have it passed by the Senate  immediately before the final day of session which is 06/20/18. 

We will let you know what actions Senator Serino has taken to introduce the bill later in the week. Please note that if a companion bill has not been introduced by Friday I will ask that you again reach out to your Senator to respectfully request an update on this matter.

I appreciate all of your efforts! 

Claudette Royal
New York State Ombudsman
NYS Office for the Aging

Friday, June 8, 2018

Three Links This Week

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

Links to three articles highlighted in this week’s NCCI social media. You can visit NCCI on Facebook and Twitter at the following links:


This week - June 1-8, 2018:

Julia Bascomb, Executive Director, Autistic Self Advocacy Network

A hopeful but critical look at what the disability rights movement has done, and what it needs to do better.

Robyn Powell, Rewire News - May 31, 2018

This Midterm Election year, people with disabilities are starting to look not just at voting, but also running for elected office.

E. Price, Medium - March 23, 2018

A radical re-examination of what it means when people we are trying to help fail or disappoint us … very relevant to our approach to the disability community. (Note: This article contains some strong language).