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As the saying goes, “patience is a virtue.”  Whether it’s waiting for a stop light to change or waiting for your first child to be born, waiting is a part of our everyday lives.  Yes, some people are better at it than others, but I think everyone is impatient to some extent.   I don’t have evidence to prove it, but, based on my experience, I certainly would bet people with disabilities wait more than most.  I often tell people that I feel like I spend the majority of my life waiting.

As I’ve explained in past entries, because I need assistance with most of my basic needs, I live a very scheduled life.  Everything from the time I get up in the morning, to the times I eat and use the restroom throughout the day, to the time I go to bed at night, everything is scheduled for a specific time.  If I need to use the restroom or am hungry or thirsty, I wait for my next assistant to come.  If someone is late or doesn’t show, I have to wait to get my basic needs taken care of.  Countless times, I’ve been stuck in bed for several hours because someone didn’t show.  When that happens, I text people, wait for replies, and then wait for someone to get here to assist me. 

Personal assistance isn’t the only thing I find myself waiting on.  Since I’m not able to verbally communicate using the phone, I rely heavily on email.  While email is great, it’s not an immediate form of communication.  People don’t immediately respond to emails.  Admittedly, very frequently, I get really frustrated when people take several days or even weeks to respond to emails.  It’s especially irritating when I’m trying to get answers to questions or obtain information about something important.   It’s difficult, but I try to remind myself that most people aren’t glued to the computer everyday like I am!

People with disabilities also have to be patient when they’re on the so called “system.”  Regardless of which government program it is, it often seems like it takes ages to get anything approved or done.  Whether it’s getting a piece of medical equipment approved or getting a personal care worker’s background check done, it takes a long time.  Some of the things that people have to wait on are often essential to them being able to live their life to the fullest.  When I switched to Self-Directed Personal Care through IRIS last summer, I had to live with my parents for close to a month while I waited for enough workers to get approved so that I could live independently in my apartment again.  Some of the background checks took nearly two months to complete—it was unbelievable!  That’s just one of the many examples I’ve had where I’ve had to wait for the government to process paperwork.

Undoubtedly, almost everyone finds waiting somewhat hard.   Having a “go-getter” personality, I find waiting for certain things incredibly difficult.  I’ve realized, though, that having a disability has made me more patient than many people.  I have no choice, but to be patient in many situations. 

What do you find it hard to wait for?

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

Talk of major changes to Medicaid have many people with disabilities worried.  Right now, Medicaid programs must meet certain federal requirements, but they are administered by the states.  Indicators point toward the Trump administration moving to a block grant system for Medicaid.   Details are sketchy, but there's fear that this would mean significantly less funding for Medicaid.   

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The Disability Rights Storytellers Fellowship managed by Rooted in Rights and AAPD provides the opportunity for an individual with a disability to learn and apply skills in digital media storytelling, and to connect with media professionals to prepare participants for advanced careers in media production, journalism, online advocacy, or digital design. The project combines hands-on training on cutting edge technologies with a strong foundation in developing the individual’s voice and using story-driven videos in advocacy.  Applications are due March 15th.

Learn more and apply today!

The 2017 Aging and Disability Network Conference is calling for Proposals for Workshop Presentations. The Wisconsin Department of Health Services, through the Division of Public Health, Bureau of Aging and Disability Resources, is sponsoring the first Aging and Disability Network Conference: Together Towards Tomorrow.
This statewide training opportunity is September 6-8, 2017, at the Madison Marriott West, 1313 John. Q. Hammons Drive, Middleton, WI 53562.

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Nevada, North Carolina, and Kansas recently launched programs for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their  benefits).  Nevada's program is called "ABLE Nevada," North Carolina's program is called "NC ABLE," and the Kansas program is called "Kansas ABLE." Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life.  All three programs are open to residents nationwide.

Read about these programs

Illinois, Iowa, and Minnesota recently launched programs for ABLE accounts (accounts that allow people with disabilities to have a savings account without jeopardizing their  benefits). Iowa's program is called "IAble," Minnesota's is called "Minnesota ABLE Plan," and it's known as "Illinois ABLE" in Illinois.  Accounts can be used for disability-related expenses that will increase and/or maintain a person's health, independence, or quality of life.  All three programs are open to residents nationwide.

Read about these programs

Wisconsin Youth Leadership Forum Accepting Applications

The Wisconsin Youth Leadership Forum (YLF) is a week-long leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities.  It provides training in leadership, self-advocacy skills, and career awareness to approximately 25 students with disabilities from throughout the state of Wisconsin. YLF is a project of the Wisconsin Board for People with Developmental Disabilities.

Recently, the  Department of Health Services (DHS) announced  the expansion of Family Care services in six northern Wisconsin counties including Oneida, Vilas, Florence, Forest, Taylor and Adams. This  will provide many people access to long-term care  services for the first time.  DHS plans to expand Family Care ad IRIS statewide in the first quarter of 2018.

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Recently,  the Food and Nutrition Service published a final rule regarding various aspects related to, among other things, eligibility for Supplemental Nutrition Assistance Program (SNAP) benefits. SNAP offers nutrition assistance to millions of eligible, low-income individuals and families (including those with disabilities) and provides economic benefits to communities.  Since SNAP is federally funded, this rule confirms that ABLE funds won't compromise eligible people from accessing benefits under the SNAP program.

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The Rehabilitation Engineering Research Center for Wireless Technologies (Wireless RERC) did a study of the National Emergency Alert System (EAS) test that was done in September 2016. The Federal Communications Commission (FCC) established the EAS in 1997 for an easy way to alert the public of local and national emergencies. Wireless RERC's study finds that there is inconsistent implementation of the EAS nationwide, which results in inaccessibility to people with disabilities. The Wireless RERC made recommendations that would improve accessibility, like slower scrolling announcement text, uniformity of presentation, and muting of the regularly scheduled television program.

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