News

Yesterday, the U.S. Department of Health and Human Services (HHS) and the U.S. Department of Housing and Urban Development (HUD) announced the launch of the Housing and Services Partnership Accelerator, which will support states in developing or expanding innovative housing-related supports and services for Medicaid-eligible people with disabilities and older adults who are experiencing, or at risk of, homelessness. As the name suggests, the Partnership Accelerator will focus on helping states improve collaboration and coordination between organizations and systems that provide services and resources that help people find — and keep — stable housing in the community.

The aging and disability networks have a critical role to play in this program, and we encourage you to reach out to your state Medicaid agency and other potential partners to explore options for your state’s application. Keep reading to learn more, and mark your calendar for an informational webinar on November 13! 

Helping States Leverage New Opportunities to Provide Housing-Related Services and Supports 

A growing number of states are leveraging new opportunities and flexibilities available under Medicaid, new federal housing resources, and expanded opportunities under the Older Americans Act to cover a range of services and supports that help people find, obtain, and maintain their housing. The Housing and Services Partnership Accelerator will bring interdisciplinary teams from four states together in a 12-month learning collaborative to tackle common issues, such as navigating payment models and rates, data integration and sharing, and more. The Accelerator also will offer participating states an opportunity to share lessons learned and promising practices for improving collaboration and coordination to optimize resources, cover resource gaps, align state and local policies, and to deliver more integrated and seamless services. States will also receive one-on-one coaching support from housing and services subject matter experts.

Eligibility and Application Information 

Participating teams will include state Medicaid agencies, as well as state and community organizations focused on homelessness and housing, aging and disability, substance abuse, public health, and more. To be eligible, states must have a (Centers for Medicare & Medicaid Services-approved) Section 1115 demonstration project or Section 1915(i) state plan home and community-based services benefit covering housing-related supports for people experiencing, or at risk of, homelessness. (Sections 1115 and 1915 of the Social Security Act authorize programs that test ways to deliver and pay for health care services in Medicaid and the Children’s Health Insurance Program.)

Letters of intent are due November 15, 2023 and final applications are due December 1, 2023. Instructions for both and links to the online forms can be found on the Accelerator webpage. 

Informational Webinar 

More details about this funding opportunity will be shared at an information session (via Zoom) on Monday, November 13, from 2:00-3:00 PM ET. Advance registration is required. Complete details also can be found in the program overviews. 

Brought to you by the Housing and Services Resource Center 

The Accelerator is offered through the Housing and Services Resource Center (HSRC). Operated in partnership by HHS, HUD, and the U.S. Department of Agriculture (USDA), the HSRC is improving access to affordable, accessible housing and the critical services that make community living possible. Many people with disabilities, older adults, and people experiencing homelessness need help obtaining housing that is both affordable and accessible. Many also need access to community-based supportive services — such as behavioral health services, personal care assistance, tenancy supports, accessible transportation, and home-delivered meals — in order to live successfully and stably in the community. Without housing and services that meet their needs, they often have no choice but to live in facilities, like nursing homes and homeless shelters, or on the streets. In every state and community, there are a number of entities and programs helping people access housing and supportive services, but the housing and service systems often are siloed. Stronger collaboration between these systems would enable states and communities to coordinate resources to help older adults, people with disabilities, and people experiencing homelessness achieve housing stability, live with dignity and independence in the community, and avoid homelessness and costly institutional care. The HSRC is supporting states in building that collaboration and coordination.

Within HHS, this partnership is led by the Administration for Community Living and includes the Centers for Medicare & Medicaid Services, the Substance Abuse and Mental Health Services Administration, the Administration for Children and Families, the Centers for Disease Control and Prevention (CDC), and the Office of the Assistant Secretary for Planning and Evaluation. The Health Resources and Services Administration also is supporting complementary efforts to fund technical assistance to states to support the development and implementation of sustainable financing of health and housing programs.

On October 31, 2023, the Justice Department announced that it has issued guidance to explain how the Americans with Disabilities Act (ADA) applies to state and local government’s employment and day services. The Justice Department’s Civil Rights Division has issued this guidance to help state and local governments understand their nondiscrimination obligations and people with disabilities understand their rights under the federal law in this area. The guidance provides an overview of the ADA, the ADA’s integration mandate, and the types of employment and day services that are often offered to people with disabilities. It then answers nine questions about how the ADA applies to those service systems.

The guidance may be found on ada.gov here. A Federal Register notice discussing the guidance will be forthcoming.  To learn more about the ADA, call the toll-free ADA Information Line at 1-800-514-0301 or 1-833-610-1264 (TTY), or access the Justice Department’s ADA website at ada.gov.

Meet Jen. This volleyball fanatic has faced some challenges which have kept her off the court in recent years, but she has a goal of playing again one day. She has learned to advocate for herself, and she’s excited that the condition she has is being recognized understood more. We’re so fortunate to have on the Network!

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

This 52-year-old mom, grandma and wife has faced some challenges in life, but she’s determined to make the best of life.  Jen and her husband moved to Wisconsin from Illinois back in 2019.  She shares that in March of 2015, she started having tremors in her hands, feet and face.  The tremors quickly turned to whole-body seizures.  She went to almost all the top hospitals in Illinois looking for an answer.  She was told that she had Stiff Person's Syndrome, Essential Tremors and that she needed to be hypnotized because her "past life" was causing her seizures.  It wasn't until she had over 30 seizures in one day and was hospitalized at Northwestern Hospital that she received a true diagnosis.  She explains that her diagnosis is Functional Neurological Disorder (FND) and is a rare non-epileptic seizure disorder.  She went to Mayo Clinic in Rochester for a second opinion and they confirmed my disorder.  However, most doctors or neurologists didn't take this seriously. It was believed to be caused by trauma and wasn't very well known.  Often times, she would be accused of faking her seizures or that she was just out to get some meds.  

It wasn't until she moved to Wisconsin and became a patient at Monroe Clinic that she was finally taken seriously.  She tells us that her primary doctor and neurologist were familiar with FND and best of all, they believed her!  She decided that her goal was to become the best version of herself.  She started seeing a counselor, went to PT, OMT, Massage Therapy and a chiropractor to help her physical self become stronger.  She still knows seizures, but she’s now aware of what can set them off.  She knows what to do when she feels them coming on.  “Most of all, I don't hide from the public anymore,” she says. 

She and her husband own a wheelchair company in Juda.  They help people with disabilities all day, every day.  She can’t work a regular schedule, but she tries to help out at the office as much as possible.  

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

Jen has just joined the Self-Determination Network, but she’s excited to see what it’s about. 

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

Some exciting news for Jen is that FND is now more recognized and doctors are taking it seriously.  “I have fought and fought for my own self and didn't take no for an answer,”  she tells us. 

What are some of your hobbies?

Before Jen was diagnosed with FND, her hobbies included playing and coaching volleyball.  She coached grade school and club volleyball.  It was her hope to one day be able to play with her sons.  Unfortunately, physical stress or emotional stress can cause her to have a seizure. “However, it is still my goal to one day return to the sport I love,” she shares. 

***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.

As Disability Employment Awareness Month comes to an end, we know that most people with disabilities want to work, but there are numerous factors that play into it. Everything from scheduling, to getting appropriate accommodations , to having to about losing needed benefits. These are all major things that people with disabilities have to consider when looking for employment.

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CBS announced the continued expansion of "The CBS Performers with Disabilities Talent Initiative." Since its launch in September last year, CBS has made significant strides, hosting 3 audition workshops, conducting a casting 101 panel, and facilitating internal disability training for network executives. This initiative coincides with Paramount's second edition of its annual day-long Summit on Disability, dedicated to championing greater disability inclusion in the media and entertainment industry.

In addition, Paramount is proud to introduce Adapt, its ninth Employee Resource Group. Adapt is formed to enhance inclusion, visibility, belonging, and to drive positive change for people with disabilities, both in the workplace and in content, by educating, engaging, and empowering while removing barriers of exclusion for all Paramount employees.

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The Wisconsin Department of Health Services (DHS) is celebrating the 25th anniversary of aging and disability resource centers (ADRCs) helping older adults and people with disabilities in our state to thrive. ADRCs were first piloted in 1998 in nine counties and have since expanded to cover all 72 Wisconsin counties and 11 federally recognized Tribal Nations in the state, providing connections to resources like adaptive equipment, dementia care services, meal delivery, and more.

Read more

Self-Determination Network News:

October 2023

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

It was another great Self-Determination Conference this year. We enjoyed seeing many of you in-person, and we're glad that people who couldn't make it could join virtually. What was your favorite part about it?  Let's keep the conversation going! Share your comments, questions, and ideas. Join the conversation!

Congratulations to the 2023 Diehard Award Winners! 

We want to congratulate this year's Diehard Award winners who were recognized at the Self-Determination Conference. These individuals received a Diehard Award for going above and beyond in supporting the lives of people with disabilities. Please help us congratulate and thank these people for their outstanding advocacy efforts:

• Martha Chambers
• Rosie Bartel
• Ed Kastern
• Elsa Diaz Bautista
• John Shaw
• Susan Borri

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 Melanie. This young lady is determined not to let her limitations stop her from living a successful life. She has many goals and she’s determined to meet them. Check out this month's Member Spotlight to get to know Melanie.   

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:

• "I want to inspire others."
• 2023 Self-Determination Conference Kick-Off Exhibits and Activities 
• 2023 Self-Determination Conference Wrap Up Video
• Check out my new eye gaze system

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:

• New Home Care Program: Some patients can now get the same care at home as they would at the hospital. The Home-Based Hospital Care program, which began in July, allows patients to stay in a more comfortable place. Learn more about this program.
• Push for More Services and Supports in the Community:  Every year, Medicaid spends more than $200 billion on long-term services and supports (LTSS) for people with physical, intellectual, and developmental disabilities. Historically, over 80% of these funds were spent on institutional care in long-term care facilities. But, over the past thirty-plus years, in response to escalating LTSS expenditures and consumer preferences, both the federal and state governments have pushed to deliver more LTSS in the home and community. Read more about the efforts being done to make more services available.
• Input Needed:  The National Institutes of Health (NIH) has issued a Request for Information (RFI) inviting feedback on a proposed update to its mission statement. Comments due November 24th.
• Advocating for Marriage Equality: Disability advocates are staging a mass commitment ceremony on the National Mall in an effort to raise awareness about marriage penalties. Find out what advocates want.
• Annual Direct Care Workforce Report:  Review a new annual snapshot of the direct care workforce, including its demographics, occupational roles, job quality challenges, and projected job openings.
• Inclusive Farm: A farm in Fredonia hires people with disabilities. Find out what "farm fellows" do.
• Inclusive Outdoors Recreation: People with disabilities often face obstacles or unwelcoming environments when they try to use outdoor spaces. Read about the growing movement that is actively working to challenge the barriers and promote inclusivity in outdoor recreation.
• Disability as a Health Disparity: The National Institutes of Health recently designated people with disabilities as a population with health disparities. Find out what this means.
• Self-driving Vehicles: Driverless vehicles are becoming more and more popular. Read about some of the pros and cons of these vehicles for people with disabilities.
• 50th Anniversary of the Rehabilitation Act: The 50th anniversary of the Rehabilitation Act was in late September. Learn what this Act is responsible for.
• Family Care Concerns Continue: Wisconsin disability advocates continue to worry as for-profit companies buy two of the four nonprofit organizations that run Family Care. Find out why advocates are concerned.
• Airline Making Improvements: Following an investigation by the federal government after a complaint by a disability advocate, United Airlines has agreed to improve the experience for passengers who use wheelchairs. Read about what they're doing.
• Resource Line: The Disability Information and Access Line (DIAL) is an easy way to get connected to the services you need. Learn about this resource,
• Proclamation: October is National Disability Employment Awareness Month. Find out what this month recognizes.
• Aging Caregiver Resources: CMS released a set of resources addressing the needs of adults with intellectual and developmental disabilities living with, and receiving care from, aging parents or guardians. Check them out.
• Watch: Actor and disability rights advocate Selma Blair and President Biden recently celebrated the legacy of the Americans with Disabilities Act and the Rehabilitation Act. Watch their remarks.
• Effort to Update Limits:  People who receive SSI are forced to live in poverty. However, read about how that may be changing.
• EVV for Home Health Care Services:  Beginning January 1, 2024, the Wisconsin Department of Health Services will require electronic visit verification (EVV) for home health care services and nurse supervisory visits. Learn what this means.
• Hotel Struggles:  Staying in hotels can be a harrowing experience for people with disabilities. Find out about some of the hurdles people encounter.
• Enhancing Support for Immigrant Caregivers: A new report discusses the crucial role that immigrant direct care workers play in the U.S. healthcare system, particularly in long-term care for older adults and people with disabilities. Find out what it revealed.  

Upcoming Events 

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

• Conference On Employment Of Transition-Age Youth With Disabilities: November 1st-2nd, Virtual
• Webinar: Accessible Bathing Rooms: November 2nd, 1:30p.m. to 3p.m., Virtual

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.