Thursday, February 28, 2019

A Day in the Life

By Allison Jonergin

I awaken with a jerk. Cramps. I leap out of bed, and before I know what’s happening, I’m in the bathroom where my intestines reject yesterday’s meal-of-the-day.

Out of breath and soaked in perspiration, I hobble back to bed. Sunlight streaks through the blinds, prompting twinges of pain behind my eyes. I want to close them, but my anxiety is already awake, and my heart is pounding loudly in my chest. I toss and turn for a while, until I’ve recovered enough from my morning escapade to rise and shower. I forget to bring a towel with me, thanks to fibro fog clearing my train of thought from its tracks, and head back to the hallway closet twice before remembering to grab one. The bristles of my toothbrush scrape against my teeth like nails against a chalkboard. Already my throat is dry and hoarse – a side effect of more than one of my medications. The dry mouth rinse feels luxurious and refreshing, and I swirl it around and around in my mouth, not wanting to expectorate.

I slip off my clothes and steady myself as I step into the tub, using two shower bars for support. I get dizzy spinning around in an enclosed space, and knock a tube of exfoliator onto the floor with an echoing boom. I cringe. At first, I’m tempted to leave it, knowing there’s a good chance I’ll knock it over again. My better sense kicks in, and I realize I have an equal or better chance of tripping over it. I squat and pick it up. The warm water turns cold for a moment, and I feel as though I’m in the blast of a firefighter’s hose. My pain receptors memorize the location of each droplet to haunt me with later, long after I’ve turned off the water.

Guest Blogging with picture of a while 3 dimensional stick figure moving a giant pen
I dress in warm layers of soft clothing, ditching abrasive materials like denim. Allodynia – a pain caused by non-painful stimuli – makes it hurt when fabric rubs against my skin. Moreover, allodynia can make the surface of my head and body sensitive to touches of any kind, even a loved one’s soft embrace. A well-intentioned hug can squeeze me like a garbage truck.

I no longer risk going an entire day with cold feet. I’ll pack extra socks in my purse and slide on a second layer if I’m having trouble regulating my body temperature or the outside temperatures dip so low that the cold takes root in my bones and doesn’t leave.

With fibromyalgia, the trick is getting ahead of the pain using preventative tactics. Eating a diet rich in whole fruits and vegetables fends off inflammatory pain caused by eating foods high in wheat and dairy. Allowing ample time in my schedule to rest during the day relieves the stress of a sleepless night. I’ve crafted an exercise routine that heals and empowers my body when I practice it consistently.

Along with an extra pair of socks, in my purse you’ll find dry mouth lozenges and lip balm. Where dry mouth is, chapped lips aren’t far behind. I carry with me a bottle of water at all times to satisfy my mouth’s craving for coolness. I seek out these small sources of comfort with purpose, planning them into my day.

I hop from one sweet indulgence to the next, relishing in the relief that washes over me, cleansing my despondency until the next guilty pleasure.

Next up, a nap. 

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:

Tuesday, February 26, 2019

Help ensure Independent Living Centers receive a crucial funding increase of only $5 million in this year’s budget!

Action Alert in bold white letters on dark red background

We all know how crucial Independent Living Centers are in communities across the State. They provide a wide array of supports and services that help people be independent and integrated in their communities. ILCs rely on the State for funding to provide these vital services, but the State has failed to adequately fund centers for well over a decade, leaving centers struggling to continue providing core IL services.

Unfortunately, Governor Cuomo’s proposed Executive Budget once again failed to give centers the additional funding they need to meet the needs of their communities. But it isn’t too late to get an increase in this year’s budget!

The next step is the legislature. The Senate and Assembly will release their one house budget responses in a few weeks. There was a budget sign on letters in support of an increase in funding for Independent Living Centers in the Assembly with strong support.  Now we need to make sure the members of the Senate and Assembly’s Education Committees hear from their colleagues about the importance of ensuring their one house budgets include a funding increase of $5 million for ILCs!

ACTION: Send a message to your Senator and Assembly member urging them to speak to the members of the lower Education Committees in support of an increase of only $5 million for Independent Living Centers being included in their one house budget response!

Take Action!

Job Opening: Housing Specialist

The North Country Center for Independence (NCCI) is seeking a Housing Specialist for a statewide pilot program to provide housing subsidies to individuals transitioning or diverting from institutional settings to the community. The Olmstead Housing Subsidy (OHS) program is a project of the New York Association on Independent Living funded by the NYS Department of Health.
• Identify housing opportunities for individuals who are in need of housing in order to leave a nursing home, as well as for those who have unstable housing after leaving a nursing home.
• Assist eligible Olmstead Housing Subsidy participants through all steps necessary for enrollment, including: filling out housing applications, obtaining household goods and/or support for moving expenses, arranging unit inspections, etc.  
• Work with applicants and/or his/her Transition Specialist, Service Coordinator (SC), Nursing Home Discharge Planner, Care Manager (CM), natural support, or advocate in order to ensure that a support services plan is in place for program enrollment.  
• Conduct follow-up after subsidy is initiated including but not limited to verifying occupancy of unit and continued eligibility for program.
• Work to identify landlords, public housing, and private housing in the region which may be suitable for individuals enrolled in the OHS program in the future.
• Maintain a list of available housing in the region, including degree of accessibility, location, proximity to services, and rental costs.  
• Track and report on all activities using the statewide project database.
• Professional experience in housing, community organizing, Independent Living, long term care, and/or disability rights strongly preferred.
• Knowledge of state and local housing policies, practices, laws and issues impacting seniors and people with disabilities preferred.
• Bachelor’s degree.
• Excellent organizational and computer skills; energetic self-starter; ability to travel in NYC and possibly nearby regions.
• An equivalent combination of education and experience to successfully perform the essential duties of the position may be substituted.
• Personal experience with disability a plus.
Salary: $28,000 per year (full time position) and benefits package available
Robert Poulin at
We conform to all laws, statutes, and regulations concerning equal employment opportunities and affirmative action. We strongly encourage women, minorities, individuals with disabilities, and veterans to apply to all of our job openings. We are an equal opportunity employer and all qualified applicants will receive consideration for employment without regard to race, color, religion, gender, national origin, disability status, genetic information and testing, family and medical leave, sexual orientation and gender identity or expression, protected veteran status, or any other characteristic protected by law. We prohibit retaliation against individuals who bring forth any complaint, orally or in writing, to the employer or the government, or against any individuals who assist or participate in the investigation of any complaint or otherwise oppose discrimination.

Sunday, February 24, 2019

Action Alert: Act Now To #SaveCDPA

ACTION ALERT in white bold letters on dark red background

This action alert comes from the New York Association on Independent Living:

The Governor’s proposed budget makes drastic changes to the Consumer Directed Personal Assistance (CDPA) program that will put the whole program at risk! This proposal, if enacted, would significantly reduce the number of Fiscal Intermediaries (FIs) in the State. FIs provide necessary assistance to ensure CDPA consumers are successful and maintain their independence in the community through training, ongoing support, payroll and other administrative assistance.

Even more alarmingly, the State is planning to cut the reimbursements to FIs so drastically that it would immediately put most of the FIs, including all of the Independent Living Centers who are FIs, out of business immediately. The Governor believes that all FIs do is process payroll, which demonstrates a lack of understanding of CDPA. Such radical and ill-informed changes to CDPA puts the entire program at risk and threatens existing consumers.

Last week, NYAIL and CDPAANYS had a successful Budget Advocacy Day where hundreds of Independent Living advocates, FIs, and CDPA consumers came to Albany to fight this proposal. The legislators heard our concerns. However, they need to keep hearing from us! The Senate and Assembly will be putting out their one house budget proposals in a few weeks, and it is very important that those budget proposals successfully get rid of this very harmful proposal and that puts the whole CDPA program at risk!

*Action:*Follow the "Take Action" link to send a letter to your legislators urging them to #SaveCDPA in their one house budget proposals!

Take Action!

For information on our CDPA program, click here to visit the NCCI website.

Friday, February 15, 2019

Three Links

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

Links to three 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.

#ThingsDisabledPeopleKnow is Necessary Because Realistic Disability Representation is Scarce
Imani Barbarin, Rooted In Rights - February 6, 2019

Twitter hashtags are kind of a cliche, but they are still sometimes useful and even inspiring. This is a great example of how Twitter can foster real sharing between people with disabilities.

For People With Disabilities, Navigating Can Be Difficult In Wintertime
Dave Lucas, Northeast Public Radio - February 4, 2019

Another take on a familiar North Country accessibility issue.

The 2019 New York State Disability Priority Agenda
NCCI Blog - February 11, 2019

Our blog post linking to this year’s statewide advocacy agenda. It’s a good, quick way to get up to date on what’s happening in Albany and what the disability community wants.

Monday, February 11, 2019

The 2019 New York State Disability Priority Agenda

New York Association on Independent Living

Staff from the North Country Center for Independence are in Albany today to meet with legislators and advocate for better disability-related policies in New York State. As a member center in the New York Association on Independent Living, (NYAIL), NCCI will be focusing our broader advocacy 2019 on the issues outlined on the pages linked below:

NYAIL 2019 Legislative Disability Priority Agenda
Policy changes we want to see in New York State.

NYAIL 2019 Budget Disability Priority Agenda
New York State budget steps we want to see.

The following documents provide additional background on the current state policies and trends that determine our goals for 2019:

NYAIL Legislative Report Card 2019
An assessment of past promises and current New York State disability policy.

NYAIL Budget Report Card 2019
An analysis of how the current New York State budget addresses disability issues.

NYAIL’s 2019 Budget Priorities Letter to Governor Cuomo
Our message to Governor Cuomo for 2019.

Friday, February 8, 2019

Three Links

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

Links to three 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.

Many shelters can’t handle domestic-violence survivors with disabilities
Maria Polletta, Arizona Republic - February 4, 2019

This has been a chronic accessibility problem for years. It’s interesting to note that the shelter director quoted says the problem is they didn’t know who to call. There are ILCs like NCCI in every state ready to help people who want to improve accessibility!

Episode 68: Wally the Alligator and Sensationalism
Emily Ladau & Kyle Kachadurian, The Accessible Stall Podcast - February 5, 2019

A very interesting audio discussion, not just about what “counts” as a “service animal,” but whether disability issues are well served or distorted by seemingly “outrageous” disability stories.

Lawmakers Call For End To Subminimum Wage
Michelle Diament, Disability Scoop - February 5, 2019

More details on the new Senate bill to phase out subminimum wage: the Transformation to Competitive Employment Act, or S. 260.

Friday, February 1, 2019

Three Links

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

Links to three 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.

5 ways to protect the confidentiality of counseling clients with intellectual and developmental disabilities
Rose Reif - January 23, 2019

A really good article on confidentiality in disability services.

Experiencing an Endometriosis or Fibromyalgia Flare
Allison Jonergin, NCCI Blog - January 29, 2019

Guest blog from Allison Jonergin.

Chairman Scott, Senator Casey, and Congresswoman McMorris Rodgers Introduce Bipartisan Bill to Help Workers with Disabilities Transition to Competitive, Integrated Employment
U. S. House Education & Labor Committee - January 31, 2019

A new bill in Congress that would phase out subminimum wage.