News

New research dives into the heated debate surrounding the language of autism and finds that preferences about how to describe those on the spectrum vary substantially depending on who you ask. In a study of 728 autism stakeholders, researchers sought to examine whether the term “autistic” or the phrase “person with autism” holds favor in the U.S. However, more recently, many self-advocates have started to favor so-called identity-first language — terms like “autistic” and “disabled” — as a means to embrace that the disability is an inherent part of who they are.

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Self-Determination Network News:

December 2022

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

Disability Advocacy Day 2023

Mark your calendars!  Disability Advocacy Day will be Thursday March 23rd. We're excited to announce it will be back in-person!  More details will be coming after the holidays, but we wanted to be sure people save the date.  We hope to see you there!  

Center for Youth Voice, Youth Choice

BPDD has been working with a group of Youth Ambassadors as part of a  project called CYVYC (Civic) it stands for Center for Youth Voice, Youth Choice.

The Board For People with Developmental Disabilities applied to  be part of this national project. The goals of the project are: 1) to support states to promote alternatives to guardianship, so that fewer youth with intellectual or developmental disabilities (IDD) have legal guardians; and 2) to give youth opportunities to lead efforts to promote alternatives to guardianship. We are in year 2 or a 5 year project. The CYVYC  project and it’s ambassadors are committed to working to promote the use of Supported Decision-Making and alternatives to guardianship for transition aged youth. 

There are four ambassadors: Joran Anderson, Will Becker, Jennie Rojas, and Alesia Saffold. Ashley Mathy is mentor and Jordan also is a co-leader for the  project.

About Supported Decision Making:

• Supported Decision-Making lets adults with disabilities get the help they need to make decisions while keeping all their rights. 
• Supported Decision Making allows a person to identify Supporter(s) to help them get information, understand their options and tell others about their decisions.
• The Supported Decision-Making agreement lets teachers, doctors, bankers, and other professionals know that the person has given the Supporter permission to hear, receive, and talk about information with them.
  
  

Self-Determination is being able to  make choices about your life.

The more choices you make in your life, the better you will become at making choices.

• Tool Kit, presentations, information sheets and materials for families: https://wi-bpdd.org/index.php/supporteddecision-making/ 
• Supported Decision Making Agreement form: https://www.dhs.wisconsin.gov/forms/f02377.pdf
• Self-Determination YouTube Channel: https://www.youtube.com/c/SelfDeterminationChannel

Contact Fil Clissa for more information: fil.clissa@wisconsin.gov.

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.

This month, we shined the spotlight on Desi. This determined young lady is passionate about educating law enforcement and emergency personnel about how to interact with people with disabilities. Check out this month's Member Spotlight to get to know Desi.   

Who should we shine the spotlight on next?

Stacy’s Journal

Check out the Latest Videos!

The Self-Determination Channel is a YouTube channel by and for people with developmental or intellectual disabilities. Unlike other channels, the Self-Determination Channel stands stand out from other channels on YouTube because self-advocates host the videos, and decide and create the content. Videos are posted a couple times a month on a variety of topics self-advocates care about such as technology, employment, caregivers, independent living, and advocacy.

Check out the newest videos on the channel:

• Human Rights: #6 Choose your supports and services
• Human Rights: #7 Say What You Want and Express Yourself
• Pink Umbrella Theater Company
• Human Rights: #8 Talk To and Be Around People You Want  

We encourage you to subscribe to the Channel (you can do so by clicking the red Subscribe button on any of the video pages).

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

• Independent Living Support Pilot: The Wisconsin Department of Health Services is preparing to launch a pilot program in July 2023 to help Wisconsinites who are older or have a disability, and who are not eligible for Medicaid, get short-term services so they can stay independent and healthy. Learn more about this program.
• Study Finds Doctors Discriminate: In a series of anonymous interviews with 22 U.S. doctors, some admitted to refusing care to people with disabilities, making the excuse that they weren't taking on new patients. Find out what else was revealed.
• Employment for People with Disabilities Trending Up: U.S. employment statistics over the last several months show an improvement in employment rates for people with disabilities. Read about the current employment statistics for people with disabilities.
• Housing Barriers: Millions of people living in the United States are feeling the effects of one of the worst affordable housing crises in a generation. But for the growing number of people with disabilities, finding and retaining quality housing they can afford is even more challenging. Learn about the barriers.
• Family Caregiver Hospital Discharge Survey: GWAAR, in partnership with our grassroots caregivers, are conducting a survey to collect Wisconsin family caregiver experiences at the time of a loved one/care recipient’s hospital discharge.  Take the survey.
• Updated Long-Term Plan Needed: 25% of adult Americans live with a disability and nearly 75% of those live with family members. Find out why advocates are trying to get legislators to understand  that there needs to be a better system.
• Electronic Visit Verification Hard Launch: The Wisconsin Department of Health Service announced a date for hard launch of electronic visit verification for personal care services to begin.  Find out when it is.
• Study Highlights Impact of COVID: The ongoing COVID-19 pandemic has impacted marginalized communities in many ways, especially those with disabilities and their access to health care. Learn about the impact it had on personal assistance services.
• Addressing Wages of Direct Care Workers: The direct care workforce represents a critical component of the United States employment market, yet pay remains low. Learn how states have taken a variety of actions through provider rate increases and minimum wage policies through the Medicaid program as two strategies to address recruitment and retention. 
• Vaccine Resources: Staying up-to-date on vaccinations is the most important thing we all can do to protect ourselves from serious illness due to COVID-19. It’s particularly crucial for older adults and people with disabilities. Check out this list of vaccine resources.
• Dangers of Congregate Settings: In the wake of the disproportionate death toll in congregate settings during the COVID-19 pandemic, this report examines weaknesses in the home and community-based services ecosystem and outlines a roadmap to expand community living options to meet the needs of people with disabilities across the lifespan. Learn about how it can be improved.
• Public Health Emergency: The United States will keep in place the public health emergency status of the COVID-19 pandemic, allowing millions of Americans to still receive free tests, vaccines, and treatments. Read about why it was extended.
• Organizations Receive Funding: Forty-three organizations focused on home and community-based services received $12 million from the Wisconsin Department of Health Services. Find out what it will be used for.
• Self-Advocacy Fellowship: The Self-Advocacy Resource and Technical Assistance Center is now accepting applications for fellows for a one-year self-advocacy project. Applications due January 9th.

Upcoming Events

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

• Webinar: Strengthening Advocacy In The HCBS Settings Rule: Getting The Services You Need From The Waiver: December 14th, 11:30a.m. to 1p.m., Online

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.

What’s your name? What’s your date of birth?  Please state your Social Security number.  Questions such as these are commonly asked when people are setting up appointments, participating in important personal financial meetings, or completing other personal business.  Most adults are able to answer these basic questions without even thinking about it.  In this day in age, we have to make sure it’s a legitimate source we’re giving our personal information to, but, generally speaking, if it’s a credible source, people are able to verbally say their personal information when asked.  People with disabilities and health conditions frequently have to provide personal information on a regular basis because it’s required in order to receive the services and supports they need to live a successful life.

“Please state your date of birth and Social security number,“ a lady from the Social security Administration said to me on a recent call to fill out the application for a benefit I’m going to soon qualify for.  My parents were on the call too—in fact, my parents setup the call and were going to do it for me because we thought we had setup my mom as a representative for me so she could speak on my behalf (due to my communication barriers).  It turned out that wasn’t the case.  My dad called me on his phone, put me on speakerphone, and my mom put the lady on her phone on speakerphone so that we could hear each other. 

After calling me, my parents thought that the lady would be able to ask me a simple yes/no question such as, “do you give your mom consent to speak on your behalf?” She eventually did ask that, but first she needed me to state my date of birth and Social Security number.  My parents tried explaining think I use a communication app and type everything out—at this point, I was typing something out on my communication app to see if she could hear it.  She could, so my parents explained that I could type out my birth date and Social Security number—it’d just take awhile.  The lady agreed to wait while I typed them out.  After that, she allowed me to give my mom consent to help answer the questions.

The application for this particular benefit was absolutely ridiculous!  Not only did it ask for all of my financial information, it asked about all of my health history and capabilities. My parents were able to answer most of the questions and I chimed in with my communication app when needed. It took an hour to complete the application.  It would have taken a lot longer if my parents hadn’t been able to help.

As I’ve discussed in previous entries, answering questions and having to tell people about your condition and limitations over and over isn’t easy--especially in this scenario where somewhere in the system there should be most of the information from previous benefit applications I’ve done.  While I understand some health conditions change frequently, cerebral palsy doesn’t really change too much. People don’t like rehashing what happened to them or what they can’t do.  It adds another layer to it when you need assistance completing the interview (yes, theoretically I could have answered each question by typing it out on my phone; however, there’s no way a person at Social Security would have time to wait—it’d literally take a full day to do).  Thankfully, my parents are able and willing to help me with things like this, but I’m sure it isn’t easy for them either to explain my circumstances—again, we try not to dwell on my limitations.

In an ideal world, applications such as this would be able to be completed digitally.  People would be able to fill it out on their own, do electronic signatures, and be able to communicate through an online portal if clarification is needed.  It’ll be awhile, but I think things will become even more digitized.  The need to answer those seemingly degrading questions about my circumstances will always be a part of my life, but I’m hopeful that as things become more digital, the need to verbally state personal information will decrease.  For some people, having things become more digital has been an inconvenience; however, for people like myself, it has been amazing—I can’t wait for more opportunities to be available digitally! 

***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.

Meet Desi.  This determined young lady is passionate about educating law enforcement and emergency personnel about how to interact with people with disabilities.  She also is a dedicated volunteer in her community.  We’re so fortunate to have her as a member of the Network! 

What's your story?  Tell us a little bit about yourself.

Desi is 32 years old and lives in her own apartment.  She has a helper come in twice per week to help with meal prep and household chores. She is very determined and outgoing lady.  She spends her time volunteering at various places.  She volunteers at a animal shelter twice per week, a place where foster families can get clothes once per week, and the Donna Lexa Art Center twice per week.  “I enjoy splatter painting at the Art Center the most,” she says.  She’s also involved with some of the activities at LOV Inc and  serves on the Wisconsin Board for People with Developmental Disabilities. 

What does Self-Determination mean to you? Why is it important?

To Desi, self-determination means, “independence and living on my own with support.” It’s important to her because it makes her happier. 

Tell us some good news - what's the most exciting thing happening for you (or in Wisconsin) in terms of self-determination?

Desi is creating a presentation that will help law enforcement better understand how to interact with people with disabilities.  She hopes that by educating them about certain behaviors or reactions people may have, it will cut down the number of people with disabilities getting hurt or traumatized. 

What tip or resource would you like to share with people who want to be more self-determined?

Desi encourages people that if you fall, to dust yourself off, and get right back up.  “You’ve got it,” she exclaims! 

What are some of your hobbies?

In her spare time, Desi loves doing arts and crafts.  She enjoys making bracelets for law enforcement and fire departments.  She also enjoys biking around her neighborhood and hopes to get into backpacking someday. 

***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.

Forty-three organizations focused on home and community-based services received $12 million from the Wisconsin Department of Health Services (DHS). The funds will be used to improve home and community-based services for the elderly and those with disabilities. The industry is facing a pressing workforce shortage crisis; one in four direct caregiver positions is vacant.

Read more

The United States will keep in place the public health emergency status of the COVID-19 pandemic, allowing millions of Americans to still receive free tests, vaccines, and treatments. The possibility of a winter surge in COVID cases and the need for more time to transition out of the public health emergency to a private market were two factors that contributed to the decision not to end the emergency status in January.

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Many people with disabilities describe challenges in finding physicians prepared to care for them. Not only do many clinics lack the necessary equipment—such as scales that can accommodate people who use wheelchairs—but at least some physicians actively avoid patients with disabilities.

Read more

In the wake of the disproportionate death toll in congregate settings during the COVID-19 pandemic, this report examines weaknesses in the home and community-based services (HCBS) ecosystem and outlines a roadmap to expand community living options to meet the needs of people with disabilities across the lifespan. The 2014 Medicaid HCBS Settings Rule added specific requirements to ensure integrated settings were truly community-based. Much of the requirements to meet the Settings Rule are reflected in self-directed waiver services. 

Read more

Staying up-to-date on vaccinations is the most important thing we all can do to protect ourselves from serious illness due to COVID-19. It’s particularly crucial for older adults and people with disabilities. As trusted voices in their communities, many aging and disability organizations across the nation are working this season to educate people about the latest vaccines and help older adults and people with disabilities overcome any logistical challenges they face in getting vaccinated.

Acting ACL Administrator Alison Barkoff recently joined an online discussion with Surgeon General Vivek Murthy about the power of partnerships in increasing bivalent vaccination of older adults and people with disabilities. Representatives from two ACL-funded aging and disability service providers — Walter Glomb, executive director of the Connecticut Council on Developmental Disabilities, and Bev Kidder , vice president of community programs at the Area Agency on Aging of South Central Connecticut — also participated in the discussion, sharing powerful stories of how collaboration can help older adults and people with disabilities get vaccinated.

Additional Resources

• The ACL COVID-19 webpage provides resources and information for older adults and people with disabilities, including resources for people with COVID-related disabilities.
• The Disability Information and Access Line (DIAL) helps people with disabilities get information on COVID-19 vaccinations and testing.
• The Eldercare Locator connects older adults and their families to services in the community.