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“You don’t know what you don’t know.“  Most people have heard a similar saying before.  We hear people say you should always keep learning.  When we are younger, we often think we know everything we need to know about life.  As we age, though, we realize that there is so much more to learn.  Whether it’s learning something new about your favorite sports team, your city, your vehicle, your neighbor, a health condition, a financial resource, or just a fun fact about something silly, we continue to learn every day.  People with disabilities are no different—in fact, it sometimes seems like we are forced to find out more information and figure complicated situations out more than the average person.

My parents and I used to consider ourselves pretty educated people when it came to navigating the whole “disability system.”  My mom worked in the special education field for over 40 years, my sister is an occupational therapist, and I’ve been pretty active in disability advocacy for a few years now.  One would think given that combination we’d have a pretty good handle on how everything works and what resources are available.  However, that couldn’t be further from reality. 

In recent months, we have found ourselves wide-eyed with new information, but yet having to go to great lengths to find other information.  It’s not just about one thing either—it’s multiple issues.  Obviously, we had to learn and the long-term care system years ago even before I graduated college.  My parents and I met the local Aging and Disability Resource Center (ADRC) where we were explained and given the choice of two options—IRIS or Family Care. IRIS sounded like the best option for me.  I vaguely remember picking my consultant, but I don’t think it was ever explained that I had a choice of what IRIS Consultant Agency and Fiscal Employment Agency I wanted.  I’m almost embarrassed to admit this, but it was well over five years after I started in IRIS before I realized I had those options.  I may have missed the boat on that, but information wasn’t readily available either.  Then, when care issues started to arise years ago, my consultant gave us all the resources and explained all she could, but there wasn’t Information easily available.  Now, yes, I understand that I choose to self-direct everything and that’s part of it; however, it’s really had to do without knowing what’s available.  Furthermore, last fall, when I just wanted to learn more information about Family Care and ask questions, the ADRC wouldn’t even meet with me unless I enrolled.

Long-term care is just one example of where I find myself still learning the hoops.  A few months ago, I visited my Independent Living Center.  They have an accessible model house that has all sorts of assistive devices, so I wanted to see if they had anything I could benefit from.  It turns out I already have a lot of the things they had, but I was talking with the assistive technology specialist about accessing my computer.  He mentioned that I may want to try eye gaze.  I had tried it many years ago and didn’t like it, but he said technology has come a long ways and that I may want to try it.  He explained I could get it funded through the Telecommunications Equipment Purchase Program (TEPP).  I had never heard of it before.  It’s a program through Wisconsin Public Service that funds assistive telecommunications equipment for people with disabilities.  The rep from the eye gaze company came and did a demo a few months ago.  I was able to try it, and I was able to successfully use it.  It was actually really cool—I will be able to control my computer with just my eyes.  We’re just waiting for my TEPP application to be processed and then I’ll be getting the equipment.  Not knowing about TEPP, I’ve probably missed out on some assistive technology equipment that would have made life easier.  Again, I don’t know how people are supposed to know about these programs.

Health care is another area where information seems scarce.  As I’ve explained in a previous entry, I started seeing a rehabilitation doctor a few months ago.  My neuro team was shocked when I told them I didn’t have one.  The rehab doctor sort of oversees my medical care.  I left the first appointment feeling like this should have happened years ago—not because I’m thrilled with all these extra appointments I’ve had, but because it may have been helpful in treating or preventing some of the issues I had.   My sister later explained that rehab doctors are a relatively new concept, but I feel like my regular doctor should have referred me.  Again, how are people supposed to know these are available?

Recently, my parents and I have started trying to figure out how my benefits will change when their benefits change.  We’ve found out that there’s a lot of confusion about this and people are being very misinformed.  After my parents made several phone calls and I talked to friends with similar circumstances, we’ve kind of have an idea of what needs to happen.  There isn’t a person that guides you through it.

It’d be a huge understatement to say we’ve learned a lot in the last few years.  There’s truly not a road map on this journey.  I’m truly blessed that my parents and I have the cognitive capability to navigate this curvy road together.  I’ll continue to do everything in my power to help others do so as well! 

***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.

The goal of The John A. Hartford Foundation Business Innovation Award is to highlight the successes of community-based organizations (CBOs) that are partnering with health care entities, such as health systems and health plans, and spur the replication of these partnerships nationwide.

The annual award recognizes one or more CBOs that have made significant strides in partnering with health care entities to improve the quality of life for older adults and/or persons with disabilities. Awardees demonstrate the pursuit of bold, transformative initiatives designed to integrate health care and long-term services and supports.

Eligibility: Nominations from an array of community-based aging and disability organizations are encouraged. Eligible recipients include, but are not limited to, Area Agencies on Aging, Centers for Independent Living, faith-based organizations, and other community-based service providers. Organizations may self-nominate.

Nomination Process: For consideration for the 2019 Business Innovation Awards, please complete the nomination form in its entirety by June 14, 2019. Incomplete forms will not be considered. If you have questions, email businessinstitute@n4a.org.

Selection Process: Awardees are chosen by a review committee of representatives from foundations, health care entities, and CBOs. The review committee will select one winner and up to two runners-up. Awardees will be announced at n4a’s 44^th Annual Conference in New Orleans, July 27-31, 2019. All awardees will receive a plaque and first place winner will receive a monetary award of up to $5,000.

Nominations due Friday, June 14, 2019

Visit the nomination webpage

The Department of Labor, Office of Disability Employment Policy (ODEP) is inviting stakeholders to participate in their Section 14(c) National Online Dialogue to gather and consider perspectives on the present and future of disability employment, including the roles of subminimum wages and competitive integrated employment. ODEP asks you to share your ideas, individual stories, and personal experiences illustrating the impact of Section 14(c) on the employment of people with disabilities.

Since 1938, Section 14(c) of the Fair Labor Standards Act has authorized employers to pay wages that are less than the Federal minimum wage to workers who have disabilities for the work being performed, after receiving a special wage certificate from Department of Labor’s Wage and Hour Division.

The purpose of this National Online Dialogue is to capture perspectives about Section 14(c) based on individual input from those "on the ground," including a wide range of stakeholders. The information gathered during this important online dialogue will provide the U.S. Department of Labor with an opportunity to better understand the current landscape, as well as the potential future of Section 14(c).

Three main topics within the dialogue are: 

• Use of Section 14(c) and observed trends
• Experiences transitioning from the use of Section 14(c) certificates
• Vision for the future of work and workplaces; the landscape over the next five to ten years

This online event is open to the general public. ODEP strongly encourages people with disabilities, their families, providers, disability organizations, employers, researchers, and other stakeholders who have experience with, or opinions about, Section 14(c) to share their perspectives and ideas for the future. INPUT IS DUE BY JUNE 14, 2019.

A week before the official start of the 2019 hurricane season, the National Council on Disability (NCD)—an independent federal agency—released its latest report, titled, Preserving Our Freedom: Ending Institutionalization of People with Disabilities During and After Disasters.  The NCD examined available data from several major storms and disasters and found that people with disabilities are frequently institutionalized during and after disasters due to conflicting federal guidance; a lack of equal access to emergency and disaster-related programs and services; and a lack of compliance with federal law..

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The new "conscience rule" which allows health care providers more leverage to decline care that they disagree with has disability advocates worried.  The U.S. Department of Health and Human Services finalized an updated “conscience rule” that protects medical staff and health care entities from having to provide, refer to, or pay for services such as abortion, sterilization or assisted suicide.  Advocates feel that the implications are much more extensive because the rule says that an individual can’t be required to “perform or assist” in any part of a “health service program” if contrary to the person’s religious beliefs or moral convictions. 

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Federal officials are looking closer at how money is being spent in ABLE accounts.  The U.S. Department of Housing and Urban Development recently issued guidance to public housing officials across the country clarifying how they should treat funds accrued in ABLE accounts.

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A new grant opportunity from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has been announced.

Rehabilitation Engineering Research Center on Technology for People who are Deaf or Hard of Hearing: NIDILRR seeks to fund research and development that leads to innovative technological solutions and strategies to improve the accessibility, usability, and performance of technologies designed to benefit people who are deaf or hard of hearing.

The purpose of the RERC program is to improve the effectiveness of services authorized under the Rehabilitation Act by conducting advanced engineering research on and development of innovative technologies that are designed to solve particular rehabilitation problems or to remove environmental barriers. RERCs also demonstrate and evaluate such technologies, facilitate service delivery system changes, stimulate the production and distribution of new technologies and equipment in the private sector, and provide training opportunities.

Please visit the link above for more details about the grant opportunity and application process. This grant opportunity closes on July 19, 2019.

Great entertainment requires authentic stories and genuine representation of all people. This includes diverse people with physical, cognitive, sensory, mental health and other disabilities.  RespectAbility, the nonprofit which created The Hollywood Disability Inclusion Toolkit, is now offering a lab  series for emerging entertainment professionals.  

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Voice activated digital assistants have become more and more popular in households around the world.  Simple voice commands can literally do thousands  of tasks.  However, for some people with disabilities, these amazing tools are inaccessible without some sort of augmented feedback.  An engineer at Google went on a mission to change that for a very special reason--his brother has  disabilities and is unable to speak.  He developed a device that triggers commands to the device without having to verbalize them.  It involves a button that plugs into a phone, laptop, or tablet using a wired headphone jack that can be connected via Bluetooth to access the assistant.

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• Is at least 18 years old
• Has a neurological diagnosis (such as but not limited to post-polio syndrome, spinal cord injury, multiple sclerosis) for at least 6 months.
• Use a wheelchair (manual or power) at least 75% of your mobility time inside your home and 100% of the time outside your home.
• Has a computer with internet access.
• Is able to read and understand English.