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Self-Determination Network News: July 2019


By SD Network, 2019-07-15

96 Self-Determination Network News:

July 2019

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Registration Now Open

The 2019 Self-Determination Conference will take place October 14th-16th at the Kalahari Resort in Wisconsin Dells.  The Conference empowers people with disabilities in Wisconsin to have more control over their lives. Technology is constantly evolving and so is the Self-Determination Conference. Join us as we learn ways to live healthier, happier and more productive lives.  Register today!

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Let's Talk about Self-Direction!

InControl Wisconsin Board member Lynn Breedlove has written a paper entitled, "Self-Direction Worldwide: Contrasting Beliefs and their Impact on Practice", which reviews the evolution of self-direction over the last 25 years, and the variety of self-direction definitions, values, and practices around the world.  He will present the paper at an international  Disability Congress in Scotland in August. We invite you to read the paper and join the discussion

128 Stacy’s Journal

"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. Sometimes, though, getting new things can bring on mixed emotions and can feel like a reality check."


In this month's entry, Stacy talks about how getting medical equipment isn't always fun and can be emotionally difficult for some people. Have you ever experienced this?We encourage you to share your thoughts and experiences as well.

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

  • New Technology:  Technology continues to evolve.  Learn about a new service that allows people to control the television with their eyes. 
  • ABLE Accounts Off to a Slow Start:  Viability of the ABLE account program is in question as far fewer people have opened accounts than expected.  Find out how many accounts need to be opened by 2021 in order to sustain the program.
  • Comment Period for Nondiscrimination Rule: 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.  People can submit comments on this until August 13th.
  • Access to Fitness Equipment:  Recently,a bill was introduced in the Senate to improve access to fitness facilities for people with disabilities.  Read about what this bill would ensure.
  • New Law Helps Deaf Community: In June, a bill was passed in Wisconsin that gives the Deaf community more assistance.  Find out what this bill does.
  • Supported Decision Making Grant:  The Administration for Community Living 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 through the use of a full range of decisional supports. The grant opportunity closes August 19th.
  • Transition Grants for People with Disabilities from Minority Backgrounds: The National Institute on Disability, Independent Living, and Rehabilitation Research announced funding opportunities for new Disability and Rehabilitation Research Projects on Independent Living Transition Services for Youth and Young Adults with Significant Disabilities from Minority Backgrounds.  Find out more about these grants.
  • Disability Inclusion Award:  The Department of Labor announced a new award program for federal contractors.  Learn more about the award.  

128 Upcoming Events                                    

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

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. 

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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 a growing trend, young adults with disabilities now have more opportunities than ever to live with typically-developing peers who double as their caregivers. Due to the  national shortage of care providers, and group homes often having long waiting lists, a company in Minnesota created a roommate matching program for people with and without disabilities.  People with disabilities are able to choose where they want to live, who they want to live with, and the level of support they receive.  For the roommate, the benefits are tax-free salaries and being able to assist people to live more independently.  

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We are excited to announce the U.S. Department of Labor’s new award program for federal contractors – the Excellence in Disability Inclusion (EDI) Award.

Established by the Office of Federal Contract Compliance Programs (OFCCP) and the Office of Disability Employment Policy (ODEP), the EDI Award recognizes federal contractors who go above and beyond to recruit, hire, retain, and advance individuals with disabilities in the workplace.

The 2019 application process is now underway. Interested federal contractors can click here to learn more and apply.

In addition to presenting an opportunity for federal contractors to be recognized for their disability-inclusion efforts, the EDI Award will help showcase successful programs and best practices that others can emulate.

In addition to being recognized for excellence in disability inclusion, EDI Gold Award recipients will receive a three-year moratorium from OFCCP compliance evaluations.

Federal contractors will need to meet certain criteria to be considered for the EDI Award.

Apply now

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The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL is announcing a funding opportunities for a new Disability and Rehabilitation Research Projects (DRRP) on Independent Living Transition Services for Youth and Young Adults with Significant Disabilities from Minority Backgrounds.

Disability and Rehabilitation Research Projects (DRRP) Program


The purpose of the DRRP program is to plan and conduct research, demonstration projects, training, and related activities (including international activities) to develop methods, procedures, and rehabilitation technology that maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities.

DRRP on Independent Living Transition Services for Youth and Young Adults with Significant Disabilities from Minority Backgrounds: This particular DRRP priority is a joint-funding collaboration between NIDILRR and the Independent Living Administration (ILA), both within the Administration for Community Living (ACL). The grantee will conduct research to generate evidence-based practices for services provided by Centers for Independent Living (CILs) to facilitate the transition of youth with significant disabilities from racial and ethnic minority backgrounds who were eligible for individualized education programs and who have completed their secondary education or otherwise left school.

Applicants under this priority must propose to conduct research to:

(1) systematically identify promising practices for facilitating the transition of youth and young adults with significant disabilities from minority backgrounds,

(2) develop at least two manualized transition interventions for youth and young adults with significant disabilities from minority backgrounds, and

(3) assess the feasibility and efficacy of the transition interventions for youth and young adults with significant disabilities from minority backgrounds.

Applicants must also include a plan of dissemination, training, and technical assistance services to CILs, regarding services to facilitate the transition of youth and young adults with significant disabilities from racial and ethnic minority backgrounds to post-secondary life. To help ensure the relevance of the research-based knowledge generated by this grant, CILs must be substantially involved in the design and implementation of the proposal, including all research, development, dissemination, training, and technical assistance activities.

Minority entities are the only applicants that are eligible to apply for this grant opportunity. 

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

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.

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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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Stacy's Journal: The Reality of Equipment


By Stacy Ellingen, 2019-07-01

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

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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."

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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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