Tuesday, April 30, 2019

Mental Illness and Coping in Relationships

By Gemma Tendrich

Often, when the topic of handing mental illness in regards to romantic relationships comes up, it comes with the assumption that only one person in the relationship is struggling with mental illness. These discussions seem to focus on how someone without mental illness can help their partner, but rarely do I see advice about relationships where both partners have mental illness. It is a topic that needs to be focused on more, especially in regards to understanding how to mutually support each other in a relationship. This is especially true when it comes to individual coping mechanisms and how they might overlap or conflict.

Guest blogging with white 3 dimensional stick figure writing with a giant pen
Say you and your partner both have anxiety disorders. When your partner has a panic attack they often pace the room and verbally name things around them as a way to ground themselves. However, the way your brain processes anxiety means that the movement and noise of your partner doing this can become over stimulating, causing your anxiety to worsen.

I feel situations likes these are rarely talked about. There are points where two people can have conflicting needs for their mental health that happen at the same time or can feed into each other in ways that worsen the situation. But situations like the one mentioned above don’t mean that there is something wrong with the relationship, or that the coping mechanism someone is using is bad. It just means that those in the relationship need to sit down and have a discussion about their needs when it comes to mental health. Maybe coping mechanisms can be adapted or outside support systems can be brought in. In the above example, perhaps when your partner paces and uses verbal tools to cope you can go into a separate, quieter room as to not get overwhelmed. Or, if your partner needs to talk with someone, but you are too overwhelmed to give them verbal support back, they can call a friend or family member for support.

The important part is to understand how to communicate your needs in a romantic relationship and be willing to listen and adapt to the needs of your partner so that both of you can be happy and healthy together. This is true in every aspect of a relationship, but how mental illness can factor in is something more should be open about talking about.

Let’s Talk About Fatigue

By Allison Jonergin

There are types of exhaustion that are commonplace in the lives of some that I have never experienced. Some parents work long hours and care for young children. Childless, this routine and the accompanying exhaustion is a stranger to me. I’ve seen it, I’ve heard people talk about it, but I’m not getting up in the middle of the night to feed an infant or to change a child’s sheets after an accident.

Guest blogging with white 3 dimensional stick figure writing with a giant penI have chronic fatigue syndrome (CFS). Since it has been around, it has earned new names like systemic exertion intolerance disease (SEID) and myalgic encephalomyelitis (ME), as researchers’ orbit nears the true cause and nature of this disease. Myalgia refers to muscle pain, while that scary looking word means inflammation of the brain or spinal cord. According to the CDC, it leaves one in four sufferers house- or bed-bound at some point (“What is ME/CFS?” 2018).

The headlining symptoms of CFS/ME are fatigue that inhibits one’s ability to carry out the activities one once could and the worsening of symptoms following activities that push one’s energy envelope. The latter is called post-exertion malaise and happens after physical, mental or emotional activity.

Carrying a few items to the cash register feels like frantically turning over a dead engine. At last it guns forward, only to die moments later. But I’m able to coast a ways, and that’s often how I go about my day. Coasting. Turning over. Dying. A trip to the grocery store is an all-day affair, and I always bring backup. I don’t do the driving or even push the cart if I can get away with it. I lift only half the items onto the conveyor belt, then back into the cart, then into the car, then into the house, then onto the countertops, then into the cupboards. I’m hyperaware of every movement I make, feeling my energy levels repeatedly pounding into rock bottom until I finally find myself lying down.

I also experience brain fog, headaches, chills, night sweats, joint pain, the need for excessive sleep without feeling rested afterward, insomnia, chemical and food intolerances, tender lymph nodes and the worsening of symptoms upon sitting or standing.

Sometimes my symptoms will worsen right away, like when I need to rest after walking my dog. Other times I’ll take pride in surviving a busy day, only for the aftereffects to hit me like a truck the next morning.

For now, patients can only be diagnosed after a doctor rules out all other possibilities. More research is needed to develop diagnostic tests and treatment options.

Friday, April 26, 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:

Facebook:  https://www.facebook.com/ncciplattsburgh/
Twitter:  https://twitter.com/NCCIPlatts

New content is added every day.

Teaching “Yes Means Yes” Can Make Sex Education More Inclusive for the Disability Community
Sam Kischkel, Rooted In Rights - April 17, 2019

A fresh, personal perspective on sexuality and disability.

Why It Took Me Years To Become A Proud Disabled Woman
Wendy Lu, Huffington Post - April 12, 2019

A good overview of internalized ableism … how we act out shame and embarrassment of our own disabilities … and how we can overcome it.

Demystifying Disability
Kelly Dawson and Emily Ladau, Call Tour Girlfriend Podcast - April 18, 2019

A fun conversation between two disabled women, comparing notes on living with disabilities and how society deals with disabled people.

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:

Facebook:  https://www.facebook.com/ncciplattsburgh/
Twitter:  https://twitter.com/NCCIPlatts

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:

Facebook:  https://www.facebook.com/ncciplattsburgh/
Twitter:  https://twitter.com/NCCIPlatts

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.

Housing:

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.

Elections:

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.

Housing:

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.

Employment:

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
Email: mparker@ilny.org
Visit Our Website:  www.ilny.org

Like us on Facebook!