News

The U.S. Access Board seeks an Events and Communication Specialist to serve in its Office of Executive Director. This Events and Communication Specialist position will be responsible for planning, coordination, communication, and administrative and logistical support for virtual and in-person public events hosted by the Access Board. Additionally, they will manage the agency’s social media platforms, including content development and audience engagement. More information about the duties is in the vacancy announcement. 

Current or former federal employees who qualify as status candidates, candidates eligible under the Veterans Employment Opportunity Act, the Career Transition Assistance Plan, or the Interagency Career Transition Assistance Plan, and candidates eligible for special hiring authorities (e.g., Schedule A appointment for persons with disabilities) or who are eligible for Veterans’ Recruitment Appointment should respond to Vacancy Announcement #23-AB-8-MP. Candidates who are U.S Citizens or U.S. Nationals with no prior federal experience should respond to Vacancy Announcement #23-AB-9-P.

Applications are due by January 24, 2023. 

For further information, contact the Applicant Call Center at 1-304-480-7300 or by email at accessboardinquiries@fiscal.treasury.gov.

Late in December, Governor Evers' office announced $5 million in rural transit funding.  the Enhanced Mobility of Seniors and Individuals with Disabilities Program will  help organizations and local governments providing transportation to rural seniors and people with disabilities.

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The U.S. relies heavily on unpaid family caregivers to support older adults and people living with disabilities. Now, a historic report provides new opportunities for governments to support these caregivers. There are about 53 million people in the U.S. serving as family caregivers, carrying out tasks ranging from preparing meals to helping loved ones bathe and dress. 

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A report from the National Council on Disability finds that weaknesses in home and community-based services directly contributed to “needless deaths” among people with intellectual and developmental disabilities during the COVID-19 pandemic. With limited investment in home and community-based services, the report notes that people often spend years on waiting lists and, during the worst days of the pandemic, those living in institutional settings typically had no alternative.

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The Lurie Institute for Disability Policy is seeking people of color with disabilities who self-direct to participate in a research study on self-direction outcomes.

The Lurie Institute for Disability Policy (at Brandeis University) is conducting a 5-year research study funded by National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) on Self-Direction of Home and Community-Based Services (HCBS). Self-directing means the person who needs services can decide how, when, and from whom their services and supports will be delivered.

Do you hire your own PCAs, coordinate your own services, or feel like you have choice and control over how your services are delivered? We are looking for 5 diverse persons with disabilities who have experience with HCBS to inform this study.

Self-Direction Workgroup Members will help inform the study design, recruitment strategies, co-creation of qualitative materials and interpretation of the study findings. In addition, Workgroup Members will gain experience with data collection, and qualitative data analysis and will be paid for their time. Members are expected to spend 10 hours per year in this role.

To apply, please submit a maximum one-page letter of interest describing
1. why you are interested in being a Self-Direction Workgroup Member for this research project and,
2. relevant experience that you have related to the research project

Please submit your letter and questions to Jennifer Lee-Rambharose at jllee@brandeis.edu.
The letter for submission is due by 12/20/22.

Project SEARCH is a transition programs for high school graduates with disabilities.  It helps people with job  exploration, training, and support.

Watch video to learn more 

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.