News
Citizen Network is working with the European SKILLS project to identify the extent to which self-directed support is being adopted in different countries around the world. They are now seeking to identify people around the world who would like to help us map progress on self-directed support in their own country.
August 2018
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Hurry! Early Bird Registration Ends Soon!
Register today for the 2018 Self-Determination Conference! The annual conference works to empower people with disabilities in Wisconsin to have more control over their lives. More than 600 people each year participate in the conference to learn more about self-determination and Self-Directed Supports so they can live independently, be members of their communities, and use public funds efficiently. The conference participants include people with disabilities and their family members, direct care providers, and professionals from Wisconsin’s disability community. Conference Scholarships will be available until September 7, 2018 or until funds run out. There are a limited number of scholarships available and they are determined on a first come, first serve basis. Early bird registration ends August 30th!
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 August, we shine the spotlight on dedicated mother, Lisa. She's a firm believer in self-determination as she has witnessed it do amazing things for her daughter. Stop by this month's Member Spotlight to get to know Lisa.
"We’re in the twenty-first century. Shouldn’t people know to treat a person who happens to have a disability like any other person? Unfortunately, that’s not the case. Although, it has significantly improved over the years, the general population still isn’t comfortable with people with disabilities."
In this month's entry, Stacy discusses how while the acceptance of people with disabilities has greatly improved, there is still a lot of work that needs to be done! We encourage you to share your thoughts and experiences as well.
Take five minutes to check out what's happening on the Self-Determination Network:
- SPARKS Grants: Applications for the 2018-19 SPARKS Grants are now available. These grants help to organize grassroots groups to make changes in the community that will have a positive impact on the lives of people with intellectual and developmental disabilities. Learn more and apply today!
- 2018-19 Partners in Policymaking: Partners in Policymaking is a six-session advocacy and systems change training program for people living with developmental disabilities, their siblings, and parents of children with disabilities ages birth to 21. Applications for the 2018-19 Policymaking class are due September 1st.
- Straw Bans: States and cities are being pressed by environmentalists to eliminate plastic straws, but strong objections from disability advocates and others have delayed or stopped some proposed bans. Learn why many people with disabilities are opposed to eliminating plastic straws.
- Caregiver Shortages Affecting Housing Prices: It's well known that the caregiver shortage is nationwide, but read about how now some people are saying that the high housing costs are making it more difficult to find caregivers.
- Voter Registration: Advocacy groups are working to educate people with disabilities about the multiple accommodations available to assist with voting. Read about some of the available accommodations.
- Children's Long-Term Support Forums: The Department of Health Services is holding multiple forums across the state about updates for Children's Long-Term Support. Learn about the latest updates in the CLTS Waiver Program.
- Segregation Comments Cause Alarms: Remarks from a top official at the federal agency responsible for community living leaves lawmakers looking for answers. Find out what was said.
- National Park Accessibility: The National Park Service recently announced that nine parks have received more than $10 million to improve accessibility. Read about what the funding will be used for.
- Transportation Survey: The National Center for Mobility Management (NCMM) is seeking input from state and local stakeholders to inform the future of transportation coordination.
- Modernizing Home Care: The Centers for Medicare & Medicaid Services (CMS) has suggested changes to its payment system to improve access to remote patient care services and update the payment model. Read about what the changes will do.
- Technology Helps Travelers with Disabilities to an Extent: While some airlines have mandatory training on how to assist people with disabilities, the advances in technology have made it easier for people with disabilities to travel; however, transportation systems still need some improvements. Learn about ways things could be improved.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Ability Fest: October 14th, 7:30a.m. to 4p.m., Camelot Golf Course, Lomira WI
- 2018 Self-Determination Conference: October 29th-31st, Kalahari Resort, Wisconsin Dells 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.
NYTIMES.COM: For Disabled Travelers, Technology Helps Smooth the Way. But Not All of It.
By SD Network, 2018-08-02
While some airlines have mandatory training on how to assist people with disabilities, the advances in technology have made it easier for people with disabilities to travel. Apps like Be My Eyes and Aira can help people with visual disabilities navigate through airports independently. Wheelchair ramps and lifts allow people with mobility disabilities to board buses and trains. Transportation systems could still use some improvements. Ground travel is travel by trains, subways, and busses. Although ground travel and airports must comply with the Americans with Disabilities Act (ADA), airplanes do not. They are governed by the Air Carrier Access Act. This does not have as many accessibility standards as the ADA. For example, people who use wheelchairs must leave them at the entrance to the plane, transfer to the airline's wheelchair and then to a seat on the plane. Travel on buses and trains can be challenging as some drivers do not know how to operate the lifts and some ramps have a steep incline, which is dangerous and violates the ADA.
The Centers for Medicare & Medicaid Services (CMS) has suggested changes to its payment system. The changes improve access to remote patient care services and update the payment model. Home health agencies will be able to report the cost of remote patient care as allowable costs. A new patient-driven model would make home health payments better. The old system had a 60-day payment period and used the number of therapy visits to calculate payments. The new system would only use a 30-day period and no longer count therapy visits. The changes will save Medicare providers millions of dollars and hours when they go into effect in 2019-2020.
How are you involved with self-determination? Why did you join the SD Network?
Lisa is involved with Self Determination because she believes people have a right to direct their own lives. She explains that the thought of her adult daughter, Kelsey, living in a situation where she had no power to choose how she lives her life was simply not an option. Through their involvement in, and utilization of, self-directed long-term support programs, Kelsey has crafted a life of community integration, natural relationships and supports. She points out that being non-verbal does NOT limit her negotiating skills and this is what Lisa absolutely loves about her. “It is because of Kelsey that I want self-determination for everyone – I only wish I had as much self-determination for myself,” she says.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Lisa thinks the perspective and self-determination of the family caregiver all too often gets lost or pushed to the way-side. She explains that one of the definitions of Self-Determination in the dictionary is “[self-de·ter·mi·na·tion] noun - the process by which a person controls their own life.” Through her involvement with Respite Care Association of Wisconsin and subsequent collaborations, she hopes to create greater awareness of the need for family caregivers to also achieve self-direction.
What tip or resource would you like to share with people who want to be more self-determined?
A tip Lisa would like to share is to be patient and intentional in understanding communication cues in regards to living a self-directed life-- especially for those who have difficulty communicating verbally. She explains that daughter communicates with her eyes, her behaviors, her interactions, her voice inflection – she knows with parents and guardians this comes more naturally – but to some others, this is the key to opening up many worlds for individuals with disabilities. It’s about going into it understanding it’s not always going to be an easy path (at least not in her household).
What message would you like to share with the members of the SD Network?
Lisa believes in the power of collaboration. She explains that great things happen when shared or related visions are addressed from multiple perspectives. She shares this quote with us: "It is the long history of humankind (and animal kind, too) that those who learned to collaborate and improvise most effectively have prevailed." – Charles Darwin
What are some of your hobbies?
“Good question. Who has time for hobbies,” Lisa jokes. This is a growth area for me, but she did recently start listening to audio-books, both fiction and non-fiction, as it is a form of respite to her from the world and herself. “Ask me again a year from now,” she says.
***We love hearing the views and opinions of Network members. We need to mention that the views and opinions expressed on this site are those of the person who is sharing them. They do not necessarily reflect InControl Wisconsin or any of our supporters and funders.
A tv commercial demonstrating how to interact with those with disabilities has been running in my area. While the commercial is positive and has accurate advice, when I first saw it, I questioned why it’s even needed. After all, we’re in the twenty-first century. Shouldn’t people know to treat a person who happens to have a disability like any other person? Unfortunately, that’s not the case. Although, it has significantly improved over the years, the general population still isn’t comfortable with people with disabilities.
“She’s drooling.” That’s what a man walked up and said to my mom as he handed her a paper towel in a congregational meeting after church one recent Sunday morning. Very shocked and not wanting to make a scene, my mom quietly said, “thank you.” I, on the other hand, was ready to walk out of the room right then and there. Mom made me wait until we voted on the issue and then we left. Words can’t describe how utterly embarrassed I was. I don’t even think that the people sitting at our table realized what had happened (which is a good thing), but that’s not the point. I’ve been going to that church all of my life and know that man has seen me many times before. I realize that in his heart, he probably meant it well, but if these things are still going on in a church of all places, there is a lot more educating to do. Most of the time, people with physical disabilities are well aware of what their bodies do or don’t do, and to have an adult point it out, is a real slap in the face (kids are a different story because they don’t know better).
Articles about “disability etiquette” have surfaced on social media in recent years. One thing commonly discussed in those articles is how not to automatically help a person with a disability without first asking. While it’s human nature to want to help somebody who appears to be struggling with a simple task, often people with disabilities and other conditions take pride in being able to do things independently. If someone jumps in and tries to help without asking, not only could it hinder the person’s independence, it could also unintentionally harm the person or his/her equipment. Another common thing often discussed in those articles is how people should always talk directly to the person even if he/she appears to unable to communicate or not cognitively aware. This happens all the time to me. Rather than asking me a question directly, they’ll phrase it in third-person and ask the person who I’m with. This drives me crazy! Granted, the people I’m with often answer questions for me just to save time, but questions should be always directed toward the person it’s about (if he/she is present) .
While those articles are great, I often wonder who reads them besides those who live and work in the disability community. Generally speaking, most family and friends of someone with a disability learn fairly quickly what’s considered offensive to people who have disabilities and health conditions. I’m betting that most of the people who read those articles certainty agree with the etiquette tips, but aren’t the ones who need the information.
I haven’t seen too many things about “not pointing out the obvious” for lack of a better words. In my opinion, a lot of it has to do with the way people were brought up. As I’m writing this, something else dawned on me. Fifty years ago, people with disabilities were rarely seen in public. That probably has a lot to do with why many older adults often aren’t sure what to do around people with different abilities. It certainly isn’t an excuse by any means, but it explains a little bit—some older adults were never around people with disabilities while growing up.
Dealing with other people’s reactions definitely takes an emotional toll. As I’ve said before, unless a situation presents itself, I usually don’t think of myself as having a disability. However, it doesn’t sit well when I’m reminded of my differences due to someone pointing out a flaw. Regardless of whether it was intentional or not, it still hurts. I’ve learned to laugh most of the comments off, but there are some that really sting. It’s when those happen that I need to be reminded that I’m a pretty unique person, and sometimes people are totally unaware that their comments are very degrading. All we can do is keep educating society in hope that one day each and every person—regardless of his/her unique differences—is treated just like everyone else. It’s apparent that we still have some work to do!
***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.
ADMINISTRATION FOR COMMUNITY LIVING: National Center for Mobility Management Seeks Input on Coordinated Transportation
By SD Network, 2018-07-24
The National Center for Mobility Management (NCMM) is seeking input from state and local stakeholders to inform the future of transportation coordination. Your feedback will help to shape the Coordinating Council on Access and Mobility (CCAM) federal interagency work group plan and focus areas by identifying promising practices, barriers, and challenges around coordinated transportation.
US NEWS & WORLD REPORTS: A Look at Accessibility Projects at 9 National Parks
By SD Network, 2018-07-23
The National Park Service reports that nine parks across the U.S. have received more than $10 million in federal funding to design and build projects to make trails, buildings, waterways and camping more accessible to people with disabilities.
DISABILITY SCOOP: Talk Of Segregating People With Disabilities Alarms Members Of Congress
By SD Network, 2018-07-23
Remarks from a top official at the federal agency responsible for community living leaves lawmakers looking for answers. Mary Lazare, who serves as principal deputy administrator for the U.S. Department of Health and Human Services’ Administration for Community Living, allegedly made the controversial remarks about favoring "segregation" of people with disabilities during a keynote address last week at the Autism Society’s national conference in Bethesda, Md. The Administration for Community Living quickly released a statement on their Twitter page to backtrack her comments..
WISCONSIN OF HEALTH SERVICES: Children’s Long-Term Support (CLTS) Waiver Program Community and Provider Forums
By SD Network, 2018-07-20
The Department of Health Services is holding multiple forums across the state about updates for Children's Long-Term Support. Learn about the latest updates in the CLTS Waiver Program. DHS representatives will present information on the following important
topics:
• Draft CLTS service rates
• CLTS Provider Directory
• CLTS Wait List elimination initiative
This is an opportunity to receive information, ask questions and provide input.
See attached file for dates and locations
 | CLTS Provider Forum Schedule |
| CLTSCommunicationProviderForums_2018_0718.pdf, 51KB ∞ |