News

A new grant opportunity from the Administration on Disabilities and the Administration on Aging at ACL has been announced.

Supported Decision Making Across the Lifespan Planning Grant: ACL seeks to support the planning of future state-based collaborative projects to make progress in strategies and facilitate decisional supports for all adults. The purpose of these planning grants is to develop action plans for advancing strategies that will ensure self-determination of older adults and adults with intellectual and developmental disabilities (I/DD) through the use of a full range of decisional supports. The plans will be developed with consensus from inclusive representational groups of disability and aging communities, and other key stakeholders. This would include, but not be limited to, Supported Decision Making (SDM) as a specific way of supporting decisions, and would require looking across other mechanisms to strengthening decisional capacity. Three to five state planning grants will be awarded at a federal share of approximately $50,000 to $75,000 each.

The ultimate goals of the project are to:

• Provide access to more strategies to support decision-making;
• Be able to detect abuse, neglect and exploitation easier; and
• Allow individuals to elect their preferred autonomous means of supporting their decision-making.

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

Recently, a bill was passed in Wisconsin which provides for a more appropriate scope of practice for sign language interpreters in the state, gives more protections for members of the Deaf community, and helps address the level of access. It also helps attract new and retain current interpreters.

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Whether it’s getting a new car, a new outfit, new appliances, or whatever it may be, getting something new brings excitement to people most of the time.  Usually, people want to show the item off or tell others about it.  Depending on what it is, it’s often fun to try it out or play with it.  It’s almost human nature to feel some excitement when we get something new.  Sometimes, though, getting new things can bring on mixed emotions and can feel like a reality check.

Every five to ten years, I get a new power wheelchair.  I’ve used one since I was two years old, so I’m on my sixth one.  My current one is just over three years old, so I won’t be due for another one for quite awhile.  People are often surprised when I say that’s a good thing.  Most people assume getting a new wheelchair is like getting a new car.  When it’s time for a new chair, countless people tell me, “oh, you must be so excited to get your chair.”  I just smile and laugh to myself when I hear that because it couldn’t be further from the truth.

When people get a new wheelchair—especially a customized one—it’s often a several month (or longer) process.   First, if people rely on government benefits, which most people with disabilities do, you need a very specific letter justifying why you need a new chair.  With Medicaid, a new chair has to be less expensive than the repairs and modifications needed to fix your current one.  Getting that letter from your Durable Medical Equipment (DME) provider isn’t easy.  They have to specify every single thing wrong with your current chair, explain in detail what modifications are needed, and why a new chair would be more beneficial for you.  It often takes at least a month to get a response from Medicaid.  If they say no or have questions, the DME provider has to submit a response again and wait another month to hear.  Once you finally get a yes, you then have to meet with your DME provider and often a physical therapist to determine what specific chair and features would be best for you.  Based on that, you have to meet with your primary doctor to discuss the features (it has to be in the case notes that you specifically discussed it) and get a prescription for a wheelchair.  The DME provider then submits all the paperwork to Medicaid again and we play the waiting game again.  This process takes a very long time—especially if you have customized features (elevate, tilt, recline, etc…).  Eventually, when Medicaid comes back with a decent compromise (you likely won’t get everything you want—even with justification; I was denied the elevate feature on my current chair), the provider then finally orders your chair.  At that time, depending on the type of chair you get, if you’re lucky you get to choose the color of your wheel fenders.

Once the chair ordered, it takes another couple months for it to come in.  When the DME provider gets it, they assemble it and modify it to further meet your needs.  Finally, you setup an appointment to get your new chair.  Sounds exciting, right?  Not really.  It’s actually a pretty stressful day.  With you there, they make even more adjustments and modifications based on your body and ability.  For many people, including myself, it’s very hard to adjust to a new seating system.  Even though, our posture is likely better in the new chair (because in many cases that’s one of the main reasons why we end up getting a new chair), our bodies aren’t used to it.  In fact, many times, people have to ease into using their new chair because it’s so overwhelming on the body.  It definitely takes a couple weeks to get used to.  While, yes, it’s eventually kind of cool to show people your new chair sometimes, I don’t consider it fun.  It’s frightening to think about what my life would be like without the invention of power wheelchairs, but, having said that, I’d give anything not to have to rely on one!

Power wheelchairs aren’t the only equipment I now rely on.  In a past entry, I mentioned that I had to get additional pieces of equipment a few months ago.  I received a Hoyer lift and a shower/commode chair.  While it didn’t take quite as much time as power chairs do, I had to go through the same process.  This equipment allows for safer transfers and better hygiene.  My mom, dad, and sister were all with me when my DME provider delivered the Hoyer lift.  The Rehab Tech trained them on how to use it, and then my mom and sister spent a day training my staff on it.  This probably sounds very petty, but having the lift brought into my apartment wasn’t easy for me.  Besides my adapted computer table and desk in my office, I didn’t really have any special equipment.  To simply put it, my apartment looked pretty “normal.”  Even though I know they’ll help me be able to live independently longer, bringing two additional pieces of equipment in was a reality check for me.  It was a punch in stomach realizing that I need these things to live.

Sometimes, getting new things isn’t always fun, but often, it’s necessary.  This is the case for people who rely on medical equipment to literally survive.  While getting new medical equipment or assistive devices isn’t necessarily fun and can come with mixed emotions, it’s part of life for many people living with disabilities and health conditions.  It just makes it that much more special when we do get those fun new things! 

***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.

Recently,a bill was introduced in the Senate to improve access to fitness facilities for people with disabilities. Introduced by Senators Tammy Duckworth (D-IL), Bob Casey (D-PA), and Richard Blumenthal (D-CT), "The Exercise and Fitness for All Act" (S. 1244) would promote access to exercise or fitness equipment, instruction, and classes.

It calls upon the Access Board to issue guidelines for exercise or fitness equipment to ensure that the appropriate number and type of accessible equipment is provided at a facility. The Department of Justice would be responsible for regulations to implement the new guidelines and to address exercise or fitness classes and instruction. The law also would authorize tax credits to help cover the cost of new accessible equipment. Senator Duckworth introduced a similar measure in December at the end of the previous Congress.

The bill was referred to the Senate Finance Committee for consideration. For further information, visit www.congress.gov

The U.S. Department of Health and Human Services (HHS) has issued a proposed rule to revise regulations implementing and enforcing Section 1557 of the Affordable Care Act (ACA). Section 1557 prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs or activities.

Members of the public are invited to submit comments on this proposed rule through August 13, 2019 online via regulations.gov.

Comments can also be mailed to U.S. Department of Health and Human Services, Office for Civil Rights, Attention: Section 1557 NPRM, RIN 0945-AA11, Hubert H. Humphrey Building, Room 509F, 200 Independence Avenue SW, Washington, DC 20201

Among the issues that the Notice of Proposed Rule Making seeks input on is, "whether HHS's Section 504 regulations at 45 CFR part 85 should be amended to address effective communication, accessibility standards for buildings of facilities, accessibility of electronic information technology, and the requirement to make reasonable modifications for otherwise qualified individuals with disabilities under any program or activity receiving Federal financial assistance from HHS."

New data shows far fewer people have opened  ABLE accounts than are needed to ensure viability of the program.  Created under a 2014 federal law, ABLE accounts enable people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Less than 35,000 ABLE accounts were opened as of the end of 2018, and 450,00 need to be  opened  by June of 2021 in  order to self-sustainability and continue to offer ABLE plans with low fees.

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Technology has come a  long ways.  A  tv company recently introduced a new service for people with disabilities.  The service allows people who have mobility and fine motor impairments to be able to control the television with their eyes. The new web-based Remote pairs with existing eye gaze technology which allows viewers to do things like change the channel and control the volume by using their eyes.

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 Self-Determination Network News:

June 2019

Connect | Share | Learn | http://sdnetworkwi.org/  

State Budget Update

The Self-Determination Network includes some very talented members and we want to help you to get to know each other a little better. Member Spotlight is a great way for us to get to know each other better.

For June, we shine the spotlight on Jenny.  This marketing extraordinaire found her passion to help the disability community while volunteering with the Fishing Has No Boundaries program. She encourages people not to be afraid to repeat yourself when advocating for what you need and want.  Stop by this month's Member Spotlight to get to know Jenny.

 Stacy’s Journal

Take five minutes to check out what's happening on the Self-Determination Network:

• Rideshare Discrimination: Kurt posted an article about how rideshare companies have a long way to go with disability inclusion.  Read about how people with disabilities continue to face discrimination when it comes to transportation.
• Seeing Disability Through Photos:  A growing collection of stock images that break stereotypes and authentically portray people with disabilities in everyday life are being compiled for use by the public.  Learn about how this is being done.
• Improving Technology:  There's no doubt that technology has become much more accessible to people with disabilities, but many people feel there's lots of room to improve things.  Find out what's being done to improve things even more.
• Enhancing Technology for People with Intellectual Grant Opportunity:  A new grant seeks to fund research and development toward technologies that contribute to improved abilities of adults with cognitive impairment to perform daily activities of their choice in the home, community, or workplace. Grant applications are due July 15th.
• Wheelchair Survey:  Do you use a wheelchair?  People are needed to participate in a survey about falls.  Learn more!
• Voice Assistant Devices:  Voice activated digital assistants have become more and more popular in households around the world.  Read a story about one engineer's mission To make them accessible to those who are unable to speak.
• Neat Opportunity for Entertainment Professionals:  Great entertainment requires authentic stories and genuine representation of all people. This includes diverse people with physical, cognitive, sensory, mental health and other disabilities. Learn about a new program for  emerging entertainment professionals with disabilities.
• Grant for Enhancing Technology for People who are Deaf or Hard of Hearing: A new grant 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.  Grant applications are due July 19th.
• ABLE Accounts Shouldn't  Effect Housing Access: Federal officials are looking closer at how money is being spent in ABLE accounts. Read about the guidance recently issued clarifying how housing officials should treat ABLE accounts.
• New Rule has Advocates Worried:  The new "conscience rule" which allows health care providers more leverage to decline care that they disagree with has disability advocates worried.  Find out why.
• Disaster Report:  Hurricane and tornado season has begun.  The National Council on Disability released a report on how major storms impact people with disabilities.  Find out what the report reveals.
• Employment First Partner Grants:  The Wisconsin Board for People with Developmental Disabilities is seeking up to eight organizations to engage in community outreach activities that lead to increased community integrated employment for people with intellectual and developmental disabilities. Applications are due August 16th.  Learn more!
• SPARKS Grants:  Applications for  SPARKS Grants, which are meant to organize local grassroots groups to make changes in their communities that result in a positive impact on the lives of people with intellectual and developmental disabilities, are now being accepted.  August 19th is the deadline.
• Air Travel to Improve: The International Air Transport Association 75th Annual General Meeting unanimously approved a resolution to improve the air travel experience for the estimated one billion people living with disabilities worldwide.  Learn what this means.
• Watch:  This is a great interview about the under representation of the disability community in the film industry.  Do you agree?  

 Upcoming Events                                    

Here's a sample of upcoming events listed on the Self-Determination Network:

• Pizza Ranch Outing: June 17th, 10:45a.m., to 2p.m., Pizza Ranch, Waukesha, WI
• Organizers Forum: June 18th, 12p.m. to 1p.m., Online
• Webinar: ABLE: Myths Vs. Facts: June 20th, 1p.m. to 2:15p.m., Online 
• Transportation Consumer Advocacy Team (TCAT): June 25th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Webinar: Promising Practices For Supporting Dually Eligible Older Adults With Complex Pain Needs: June 27th, 10:30a.m. to 12:30p.m., Online
• Lynzay Legois Adaptive Water Skiing:  June 28th, 12p.m. to 5:30p.m., Fischer County Park, Burlington WI
• Long Term Care Advocacy Team: July 9th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
• Webinar: Accessible Transient Lodging:  July 11th, 1:30p.m. to 3p.m., Online
• ADA Day: July 12th, 10:30a.m. to 12p.m., Capitol Library, Milwaukee WI
• ACAP Double Feature! ACAP Film Festival!: July 12th-13th, Waukesha Civic Theatre, Waukesha, WI
• Transportation Consumer Advocacy Team (TCAT): July 30th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI
• Smash Zone Social Hours:  August 5th, 12p.m. to 3p.m., Milwaukee WI
• Long Term Care Advocacy Team: August 13th, 2:30p.m. to 3:30p.m., IndependenceFirst, Milwaukee WI
• Transportation Consumer Advocacy Team (TCAT): August 27th, 1p.m. to 3p.m., IndependenceFirst, Milwaukee WI

Post your event on the Self-Determination Network and it can be included in future Network News emails to members! Questions? Suggestions?  Contact Stacy Ellingen. 

The Self-Determination Network is powered by InControl Wisconsin and supported financially by our members and Sponsors. We couldn't keep this Network going with you!  Find out how you can help support the Network.

In recent years, there has been a lot of discussion about how people with disabilities need to be more represented in television and film, both  on-screen and off.  In this great interview with Judy Heumann, she talks about the lack  of disability representation in the industry.

Watch interview