News
With primary elections less than a month away, many disability advocacy groups are coming together to get people with disabilities registered to vote. More than 340,000 people in Wisconsin with disabilities are eligible to vote, but they face many issues in both registering and voting. Advocacy groups are working to educate people with disabilities about the multiple accommodations available to assist with voting. They are also helping people with disabilities register to vote.
DISABILITY SCOOP: Caregiver Shortages Exacerbated By Soaring Housing Prices
By SD Network, 2018-07-19
It's well known that the caregiver shortage is nationwide, but now some people are saying that the high housing costs are making it more difficult to find caregivers. The pinch is affecting workers of all ages, across levels of management and specialities, making it harder for home care companies to recruit and retain people.
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. It is designed to develop a group of seasoned leaders statewide who are able to work on policies and initiatives that will support the full participation and inclusion of people with developmental disabilities in all aspects of life.
We are currently accepting applications for our 2018-2019 class of Partners in Policymaking. Follow the link below for more info and a copy of the application.
Application:LINK
The purpose of SPARKS Grants is 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 (I/DD), including individuals with diverse identities and/or individuals that are under-served.
Priority activities for 2018-19 SPARKS Grants are:
1. Increasing transportation options for people with I/DD
2. Increasing the number of people with I/DD voting
To download an application follow the link below:
July 2018
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Registration for the 2018 Self-Determination Conference is Now Open
Registration for the 2018 Self-Determination Conference is now open! 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 30. Learn more and register today!
Direct Care Worker Shortage Stories Wanted
Wisconsin lawmakers need to hear from real people about the impact the direct care workforce crisis is having on your life! Aging and disability advocates are collecting stories about the direct care workforce crisis. We want to hear from everyone—people who need direct care workers, family caregivers and direct care workers—about why direct care workers are important and how the crisis is impacting people. Please submit your story using the following form by August 1: https://goo.gl/forms/tER259RStNwNDBJJ3. If you are willing to share a picture to go along with your story, you can email photos to wiworkforcestories@gmail.com.
Transportation Survey
Transportation is consistently identified as a top concern for older adults and people with disabilities. The Survival Coalition wants to hear how your transportation options—or lack of options—impact your life. The results of this survey will be used by Survival Coalition to inform policymakers on how Wisconsin can improve transportation for older adults and people with disabilities. Please share this survey with your family, friends, and others interested in improving transportation for older adults and people with disabilities, and encourage them to take this survey by July 30th, 2018.
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 July, we shine the spotlight on InControl Wisconsin board member, Terry Lynch. Having worked in the disability field for many years, he has had a vital role in supporting independent living and self-determination. Stop by this month's Member Spotlight to get to know Terry.
"The direct care shortage is nationwide, so I know I’m not alone in this battle. Agencies, nursing homes, and hospitals are struggling to find caretakers too." For July's entry, Stacy discusses her struggle to find reliable care. 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:
- Caregiver Strain on Families: A recent survey found that the majority of family caregivers are stressed out by the demands of their family members with developmental disabilities and have deep concerns about the future. Learn why family members are stressed.
- Home Modification Grant Opportunity: Home modifications and repairs can help older adults age in place and maintain their independence. Learn about a grant intended to address barriers to optimal access to and use of home modifications that support aging in place.
- Spike in Community Living Spending: According to a recent report, there has been a major increase in government spending on home and community based services. Find out what this is largely due to.
- Medicare and Mental Health: The Affordable Care Act expanded Medicare's coverage to include important therapies to keep people with mental illnesses from needing in-patient treatment, but there are many problems with Medicare's coverage for people with mental illnesses. Read about the issues.
- ABLE Accounts in Jeopardy: Disability advocates fear that without a major change ABLE accounts could be unsustainable. Find out why.
Here's a sample of upcoming events listed on the Self-Determination Network:
- Disability Pride Fest: July 28th, 12p.m. to 5p.m., Tenney Park, Madison WI
- Endless Possibilities Conference: August 3rd, 8:30a.m. to 3:30p.m., UW-Whitewater, Whitewater WI
- 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.
Disability advocates fear that without a major change ABLE accounts could be unsustainable. ABLE accounts allow people with disabilities to save up to $100,000 without risking eligibility for Social Security and other government benefits. Medicaid can be retained no matter how much money is in the accounts. According to many advocacy groups, ABLE programs across the country are in desperate need of more account holders. It's estimated that 390,000 accounts are needed by June 2021 in order for ABLE programs to reach “bare bones sustainability.” Disability advocates are pressuring Congress to pass the ABLE Age Adjustment Act before the end of the year in hopes that it will increase numbers.
The Disability Rights Storytellers Fellowship managed by Rooted in Rights and AAPD provides the opportunity for individuals with disabilities 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 in cutting-edge technologies with a strong foundation in developing each individual’s voice and using story-driven videos in advocacy. Applications are due September 4th.
How are you involved with self-determination? Why did you join the SD Network?
Terry has been promoting the independent living cause since 1977, when he served as Assistant to the Director of the White House Conference on Individuals with Disabilities. He then managed a federal government disability rights program and had a key role in the establishment of the National Disability Rights Network. Terry returned to Wisconsin in 1985 to begin his consulting and speaking business. His writing and his work in the self-determination movement are founded on this illuminating personal experience, as well as his work with other families. Wisconsin Governor Jim Doyle appointed Terry to the state’s Board on Aging and Long-term Care in 2006 and to its Quality Home Care Authority Board in 2009. Terry is a Board member of a national advocacy organization dedicated to elevating the status and wages of direct care workers and is engaged in shaping policy advocacy for the Alzheimer’s Association of Southeastern Wisconsin. He assists Connections with issues related to effective support for older adults participating in IRIS. He also is a founding member of InControl Wisconsin.
Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms self-determination?
Terry shared that InControl Wisconsin recently held its fifth well-regarded conference on self-determination and aging. He explained that the conference was enriched by Simon Duffy, the founder of In Control in the United Kingdom, who traveled to Wisconsin to spend several days with a number of organizations, concluding with an inspirational keynote presentation at the conference-- and highlighting the pioneering aspect of Wisconsin's contribution to the advancement of empowered aging.
What tip or resource would you like to share with people who want to be more self-determined?
A tip Terry would like to share is that "Dementia"-- a prominent medical issue among older adults-- is not a diagnosis. He explains that it refers to symptoms, such as memory loss and confusion. “Alzheimer's, of course, is a frequent cause, but dementia can be caused by other, treatable, medical problems, such as alcohol abuse, depression, vitamin deficiency and adverse reactions to medications,” he says.
What message would you like to share with the members of the SD Network?
Terry’s definition of self-determination is based on his experiences with his mother. He defines self-determination as, "the most control possible over the best possible life." He explains that this was their realistic "dream" and he believes it is what we all should be striving for in our support for people of all ages in Wisconsin's long-term care programs.
What are some of your hobbies?
Terry loves spending time in the greatest meeting place he has known: a popular Racine coffee shop which attracts people of all ages. He shares that it is a remarkable source of community support for older adults (such as himself he jokes) and others with difficulty living life without some additional assistance. “And its coffee and pastry are superb,” he adds.
***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.
People who receive Social Security Disability Insurance for two years become eligible for Medicare. Many of these people have mental illnesses. Over the past 12 years, Medicare has improved its coverage for people with mental illnesses by covering most antipsychotic and antidepressant medications. The Affordable Care Act expanded Medicare's coverage to include important therapies to keep people with mental illnesses from needing in-patient treatment. However, there are many problems with Medicare's coverage for people with mental illnesses. In 2008, Congress passed the Mental Health Parity and Addiction Equity Act. This made insurance companies provide the same level of care for mental illnesses as all health issues, but Medicare does not have to follow this law. It limits in-patient psychiatric care to 190 days for an individual's lifetime but does not set this limit on other hospital stays. Plus, it does not cover most long-term treatments for people with mental illnesses.