News

Survival Coalition of more than 20 disability organizations continues to hear from people with disabilities, their families, and their supporters that the pandemic has taken a disproportionate toll, starkly accelerating the direct care worker crisis and leading to increased health and safety worries, more families leaving the workforce to care for loved ones, and high levels of stress. Survival surveyed people with disabilities who use home and community supports, along with their families. The results and stories in the attached report are worrisome and deserve immediate action in the state budget.

Read full report

Meet Renee. This self-proclaimed “Benefits Nerd”  loves helping people with disabilities navigate their benefits and making them realize that they can work. She believes Self-Determination has multiple meanings in the Benefits Analysis world, and she has a multitude of knowledge about navigating the system. We are so fortune to have her as a member of the Network!

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

Renee has been working in the Disability field for about 13 years. She has been a Certified Work Incentive Counselor and Benefits Analyst and a Social Security Administration partner since 2013. She currently works with IBA Resources, LLC. in Wausau, WI and works with people of all ages and disability types.  She explains that she is a partner with the Social Security Administration and is trained by them to counsel individuals with Social Security and other Federal Benefits who also want to go to work. 

She loves talking with individuals and families who receive Social Security, Medicare, Medicaid, FoodShare, Veterans, and other benefits about how they can get a job in the community even if they are receiving those benefits! “I call myself a "Benefits Nerd" and am here to help if you are worried that getting a job will mean you will lose your benefits,” she exclaims!  

How are you involved with self-determination? Why did you join the SD Network?

Renee shares that Self-Determination is so important in her field--being able to make good financial choices when you want a job and receive benefits is all about Self-Determination! Everyone should have input on what type of employment they want. Self-Determination can also mean having a goal of working off of Social Security or other Benefits. It is okay to want to work full time and there are many ways that goal can be achieved. To her, Self-Determination can also mean having all the tools and information you need to make the best choices in your life. She explains that knowing what type of Social Security or Health Care you have as well as knowing any other benefits you receive (for example FoodShare or Managed Care) and how these benefits are used is empowering information that can only help you with whatever goals you have. “That is the reason I joined the SD Network: Benefits knowledge helps tremendously with Self-Determination steps and goals,” she says. 

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

One of the biggest tools Renee seen created in the last couple of years to help with Self-Determination is the creation of the MYSSA accounts on the Social Security website (www.ssa.gov). She explains that creating one of these accounts can give the ability to report wages from work, request a new Social Security card, check your earnings record, change your address or phone number and many other things. This website saves everyone time, transportation, and phone calls to your local Social Security office. 

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

Renee encourages people not to be afraid to ask the big life goal questions if you receive Social Security or Medicare/Medicaid: Do you want to get married? Do you want to go to college? Or own your own business someday? Or work a full-time job? She says, “if you have a family member or loved one who is worried you will lose your Healthcare or Social Security, let's talk about how to keep those and reach your goals!”

She explains that everyone's Benefits puzzle looks a little different. What you can earn with work might be very different from a family member who also receives Social Security. Find out what the rules and safety nets go along with your own benefits!

What are some of your hobbies?

Outside of work, Renee is involved in the local Community Theater. She likes to direct plays and musicals. She also likes to play board games and travel around the U.S. She also has two very fluffy and naughty cats that she takes care of.

***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 with disabilities experience much higher risk of preventable disease and poorer health outcomes than the general population, yet adults with disabilities continue to face major physical barriers that prevents access to health care and leads to unmet health care needs. One of the biggest barriers is the need for more accessible medical diagnostic equipment. The National Council on Disability released another report about this. The findings are very interesting. The need for accessible medical equipment really shows in the statistics in the report. 

Read more

ACL's Administration on Disabilities (AoD) seeks to fund one cooperative agreement  for a Self-Advocacy Resource and Technical Assistance Center. This award will be made as a Project of National Significance as described in the Developmental Disabilities Act of 2000.

The Self-Advocacy Resource and Technical Assistance Center will:

• compile resources, best practices, training curriculum, and success stories for an online clearinghouse accessible to the public;
• provide training and technical assistance to self-advocacy organizations across the nation;
• operate a fellowship program that offers leadership development and employment opportunities for people with intellectual and developmental disabilities;
• and collaborate with a diverse range of organizations including self-advocacy organizations, disability-related nonprofits, universities, state government agencies, and others to achieve the goals of the project.

The Center will expand work around an ‘Easy Read Language’ initiative by working with state and regional self-advocacy organizations to help them build relationships and secure contracts with state and local agencies to develop easily read documents. Finally, the Center will develop procedures and tools to evaluate the usability, frequency of use, and impact of tools and other materials on the stated outputs and outcomes.

View more details and application instructions.

Please visit the link above for more details about the funding opportunity and application process. This grant opportunity closes on July 26, 2021.

Self-Determination Network News:

May 2021

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

New Bills Could Make it Harder for People with Disabilities to Vote

Wisconsin legislators have introduced bills that will make it harder for many people to vote. The Wisconsin Disability Vote Coalition has put together a summary of these bills and how it would impact people. We encourage you to look at this and, if you have concerns about the bills, to contact your legislators. 

Stay Up-to-Date about Long-Term Care Advocacy 

InControl Wisconsin is sending a letter to the Joint Finance Committee of the state legislature asking the Committee to ensure that if additional funding is added to the budget for Long-Term Care in general or for the workforce crisis, then IRIS should get its fair share. Family Care and nursing homes both received increases in the last two state budgets, but IRIS did not. 

The Wisconsin Long-Term Care Workforce Alliance does frequent videos about what's happening with the workforce advocacy. Check out this website for updates on what's happening with the workforce crisis. There are videos on how to talk to legislators about your experiences and concerns. Let your voice be heard! 

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're shining the spotlight on Felicia. This self-advocate has been proving doctors wrong since she was born. Stop by this month's Member Spotlight to get to know Felicia. 

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:

• My favorite app

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:

• No Oscar, but Nomination a Win for the Disability Community: The popular documentary, "Crip Camp," didn't win an Oscar, but many people with disabilities feel the nomination alone was a win. Learn why this is. 
• Inclusive Deodorant: Most people were never think of a stick of deodorant as being an obstacle, but for people with visual impairments or limb motor challenges, putting on deodorant is a difficult task. Read about a how one company designed an inclusive deodorant container. 
• Initiative to Hire People with Disabilities: A large technology recently announced a big initiative to hire people with disabilities.  Find out what the company plans to do. 
• Wisconsin Lawmaker Asked for Accommodations: A Wisconsin lawmaker is asking the Assembly to allow him to participate in floor sessions remotely. Read about the ongoing situation.  
• American Rescue Plan to Help Medicaid Services: The American Rescue Plan has over $12 billion for states to expand Medicaid home-and-community-based programs for people with disabilities. Find out what the plan entails.  
• Emergency Broadband Benefit Program: The Emergency Broadband Benefit is a Federal Communication Commission program to help families and households struggling to afford internet service during the COVID-19 pandemic. Learn more about this program and find out how to apply. 
• Vaccine Survey Findings: Two research studies have been done on vaccine statistics for people with disabilities. Read about what the studies found. 
• Seeking Applicants for Emergency Preparedness Committees: The Office of Emergency Preparedness and Response is seeking applicants for two new committees to provide recommendations on enhancing public health preparedness, response, and recovery for people with disabilities. Applications are due June 12th. 
• Family Caregiver Report: A new report summarizing listening sessions about the struggles and needs of family caregivers was recently released. Learn what the sessions revealed.
• Spending Flexibility: States have lots of flexibility on what they can use the extra $12.67 billion for Medicaid home-and-community-based services on. Learn what states are using the money for. 
• New Vaccine Guidelines for Facilities: Government officials have released new guidelines for the COVID vaccine at facilities serving people with disabilities. Find out what they say. 

Upcoming Events

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

• Webinar: Assembly Areas: June 3rd, 1:30p.m to 3p.m., Online
• Medicare Virtual Fair: June 23rd, 2p.m. to 6p.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.

Government officials have released new guidelines for the COVID vaccine at facilities serving people with disabilities. Long-term care facilities must educate staff and residents about the vaccine as well as offer it. They also have to report vaccination status of residents and staff to the CDC on a weekly basis. The guidelines don't require people to get the vaccine. For now, the rule only applies to certain types of facilities, but CMS is taking public comment on making a similar rule for places such as group homes and supervised apartments. 

Read more

States have lots of flexibility on what they can use the extra $12.67 billion for Medicaid home-and-community-based services on. The funding is part of the American Rescue Plan. States can use the money for everything from getting people off waiting lists to increasing wages for caregivers. Funding must be used to “supplement, not supplant” existing services, the guidance states, meaning that it has to be spent on home and community-based services that were not available under the Medicaid program as of April 1.

Read more

A new report released this week by the National Academy for State Health Policy (NASHP) shares information collected from family caregiver listening sessions. The listening sessions were designed to provide multiple forums for family caregivers to share their challenges and needs, and recommendations for services, supports, and policies to address these needs. This report, which was written by the University of Massachusetts at Boston and Community Catalyst, is a component of the Recognize, Assist, Inform, Support, and Engage (RAISE) Family Caregivers Act of 2017, and is part of ACL’s work to implement the Act.  

The family caregiver listening sessions included a range of diverse caregivers, from teen caregivers to grandparents providing care, and caregivers of varying racial and ethnic backgrounds. The listening sessions directly captured the emotional and financial stresses caregivers experience, and their priorities and concerns, including respite, caregiving education and training, and financial considerations, including direct pay for caregiving, workplace flexibility, and tax policy changes that support caregivers.  

Visit the RAISE Act Family Caregiver Resource and Dissemination Center to read the report.

The Office of the Assistant Secretary for Preparedness and Response (ASPR), in the Department of Health and Human Services (HHS) Office of the Secretary has announced it is establishing two new committees to provide advise and recommendations to support and enhance public health preparedness, response, and recovery to meet the needs of older adults and people with disabilities.

National Advisory Committee on Seniors and Disasters

This advisory committee will provide recommendations to the Secretary of HHS for meeting the unique needs of older adults. ASPR shall provide management and administrative oversight to support the activities of the advisory committee. See the detailed announcement published in the Federal Register.

The Office of the Secretary is accepting application submissions from qualified individuals who wish to be considered for membership on the advisory committee. Up to seven new voting members with expertise in senior medical disaster planning, preparedness, response, or recovery will be selected. Please visit www.phe.gov/​nacsd for all application submission information and instructions. Application submissions will be accepted until June 12, 2021.

For additional information contact: Maxine Kellman, DVM, Ph.D., PMP, Designated Federal Official for National Advisory Committees, Washington, DC, Office (202) 260-0447 or email maxine.kellman@hhs.gov.

National Advisory Committee on Individuals with Disabilities and Disasters

This advisory committee will provide recommendations to the Secretary of HHS about the medical, public health, and accessibility needs of individuals with disabilities related to emergencies. ASPR shall provide management and administrative oversight to support the activities of the advisory committee. See the detailed announcement published in the Federal Register.

The Office of the Secretary is accepting application submissions from qualified individuals who wish to be considered for membership on the advisory committee. Up to seven voting members with expertise on disability accessibility, disaster planning, preparedness, response, or recovery will be selected. Please visit www.phe.gov/​nacidd for all application submission information and instructions. Application submissions will be accepted until June 12, 2021.

For additional information contact: Maxine Kellman, DVM, Ph.D., PMP, Designated Federal Official for National Advisory Committees, Washington, DC, Office (202) 260-0447 or email maxine.kellman@hhs.gov.

The American Association on Health and Disability (AAHD) has released two research products that resulted from the AAHD Vaccine Hesitancy Survey Among Adults with Disabilities, a rapid, real-time online study of the perspectives of adults with disabilities on the COVID-19 Vaccine.

View report