News

Meet Mary Clare.  She’s a life- long Wisconsinite, from the south-eastern part of the state.  She has worked as an advocate for individuals with disabilities for most of her career.  She has seen self-determination grow for people in our state over the years and looks for this trend to continue upward.  We’re so fortunate to have her as a member of the Network! 

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

Mary Clare loves telling stories but struggles when asked to talk about herself. She has lived in Wisconsin her whole life. She grew up in rural Kenosha County, moved to Milwaukee to attend Marquette University and then made Milwaukee her home ever since. She has worked in disability advocacy, person-centered planning and grassroots community building for most of her adult working career. She feels blessed to have had many amazing teachers along the way like John and Connie O’Brien, Beth Mount, Pat Beeman, Herb Lovett, and Cindy Bentley to name just a few. She also loves connecting people, resources and ideas.  She has been doing this work around Wisconsin for a very long time. She loves what she does and still finds that she is learning something new everyday along the way.

In the spirit of self-determination, she is going to share something with you and all the readers that she has not shared widely before, She says. “I am a person who has struggled with mental health for much of my adult life. Self-Determination then is not only something that I feel passionately about in my work, it’s something I need to own personally.” 

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

Mary Clare believes that self-determination needs to be at the heart of everything we do in long term care in Wisconsin. She feels that being involved in the Self-Determination Network is a great way to stay ‘heart-centered’. She has been involved with People First Wisconsin since it’s founding in 1999, first as a staff person and now as an ally. In her current position at My Choice Family Care Wisconsin, which is an MCO, she works to connect their members with opportunities and resources to help them explore self-determination. 

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

Mary Clare explains that there is lots to be excited about when it comes to self-determination in Wisconsin.  She just mentions three ideas for our readers here:

1. Mary Clare explains, “The recent development of the Self-Determination Channel on YouTube is her first bit of exciting news.”  She loves it and is a big fan!
2. Secondly she loves watching established self-advocacy leaders like Cindy Bentley mentoring and passing the leadership baton to younger leaders like Ashley Mathy.
3. Finally, she sees self-determination moving ever closer to becoming the ‘default setting’ of everything people are trying to do in Wisconsin.   She feels that we are starting to see people with disabilities no only be welcomed to the planning table, but often taking their rightful place at the head of the table.  

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

Mary Clare shares that, “Everyone has gifts. Everyone has something to contribute and offer. Everyone has things they care about deeply that motivate them to act.” She wants you to discover what your unique gifts are. She indicates that if you are not sure where to start, ask some one you trust to help you with your discovery process. Be bold and put those gifts into action! It will not only help you to live a more self-determined life, it will help build community and encourage others to live a more self-determined life as well. 

What are some of your hobbies?

Mary Clare loves exploring art of all kinds but is especially passionate about her digital photography.  She enjoys walking and hiking. She also loves thrift shopping and up-cycling. She explains that up-cycling is the art of creative reuse where you transform old, discarded and unwanted items into something new, useful, and beautiful.

***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.

Air travel for people with disabilities continues to cause a variety of issues. A company in Colorado has developed a prototype of a plane where individuals can take their own wheelchairs onto the plane. It costs a lot of money to design and certify an airplane seat, so the company is raising money to do this. The hope is to get planes flying within 18 months. 

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A new documentary on Netflix produced by the Obamas is a popular in the disability community. “Crip Camp: A Disability Revolution” tells the story of how in the early 1970s a summer camp for teenagers with disabilities brought together a group of people who would be pivotal in seeking civil rights protections for themselves and others like them. It talks about how the laws that protect and provide people with disabilities rights were formed. 

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During this time of uncertainty and crisis, there have been reports of health care providers in some states discriminating against people with disabilities. The US Department of Health and Human Services' Office for Civil Rights issued a statement saying that laws such as the Americans with Disabilities Act and the Rehabilitation Act remain in effect making it illegal to discriminate against people with disabilities in federally funded program. 

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On Friday, the President signed the Coronavirus Aid, Relief and Economic Security Act, or CARES Act, into law. The Act provides a total of $2.2 trillion, with $955 million directed to ACL programs. On Saturday, the HHS Office of Civil Rights issued a bulletin to protect people with disabilities from unlawful discrimination in decisions about their treatment during the COVID-19 health care emergency. Together, these will provide significant support to older adults and people with disabilities. 

OCR Bulletin: Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19)

OCR provided this bulletin to ensure that entities covered by civil rights authorities keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of race, color, national origin, disability, age, sex, and exercise of conscience and religion in HHS-funded programs. The bulletin states that, "…persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative “worth” based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient and his or her circumstances, based on the best available objective medical evidence."

CARES Act

A total of $955 million will be provided to existing grantees in the aging and disability networks, including State Units on Aging and Centers for Independent Living, as well as to Tribes and tribal organizations. The CARES Act includes:

• $200M for Home and Community Based Services (HCBS) under Title III-B of the Older Americans Act (OAA);
• $480M for nutrition programs under Title III-C of the OAA;
• $20M for nutrition and related services for Native American Programs under Title VI of the OAA;
• $100M for the National Family Caregiver Support Program under Title III-E of the OAA;
• $20M for the Ombudsman Program under Title VII of the OAA;
• $50M for Aging and Disability Resource Centers; and
• $85M for Centers for Independent Living under Title VII, Part C, Chapter I of the Rehabilitation Act.

ACL staff currently are developing FAQs and other technical assistance materials. We will share these in the coming days through our resource centers and our COVID-19 page. These will include:

• Programmatic and fiscal FAQs for Centers for Independent Living
• Updates to the FAQs for nutrition services providers, which will address both the provisions of the CARES Act and other questions we have received about how waivers for Daily Reference Intake requirements affect eligibility for the Nutrition Services Incentive Program, working with food banks, contracting with food vendors, coordination with FEMA, and more
• Information on reporting requirements for COVID-19 services
• FAQs related to ADRC funding including timing, eligibility, and how states can use the funds to address COVID-19 needs.

In addition, we will update the Fiscal FAQ (for Older Americans Act programs) to reflect the increase in the allowance for administration costs that went into effect with reauthorization.

CARES Act Highlights

In addition to this supplemental funding, there are many provisions in the CARES Act that will benefit people with disabilities, older adults, and the aging and disability networks. Highlights include:

Section 3222 describes three waivers that will allow (1) 100% of funds to be transferred between congregate and home-delivered meal programs, (2) individuals who are homebound for social distancing purposes to be eligible for home-delivered meals, regardless of state or local policies, and (3) waiver of dietary guidelines, so networks can provide available meals to recipients. (These provisions will be addressed in this week’s FAQs.)  

Section 3715 allows direct care workers who provide services under Medicaid waivers (1915 and 1115) to accompany people with disabilities as they enter hospitals to continue to provide services that are not provided by the hospital.

Section 3803 provides an extension of funding for the Medicare Improvements for Patients & Providers Act (MIPPA). Provisions in this section will allow for continued funding to State Health Insurance Assistance Programs (SHIPs), Aging and Disability Resource Centers (ARDCs) and Area Agencies on Aging (AAA) to help older Americans and people with disabilities enroll in the Low-Income Subsidy for Medicare Part D (which helps pay for the Part D premium) and the Medicare Savings Programs (which helps pay for Medicare Part B).

Section 3811 extends funding for the Money Follows the Person demonstration program through November 30, 2020. 

In addition, the CARES Act provides for expanded telehealth options and explicitly includes non-profit organizations in the provisions for small business loans.

Lifespan Respite Care Program Funding Opportunities

ACL has opened three new funding opportunities under its Lifespan Respite Care Program. Lifespan Respite Care programs are coordinated systems of accessible, community-based respite care services for family caregivers of children and adults of all ages with special needs. Such programs reduce duplication of effort and assist in the development of respite care infrastructures at the state and local levels.

Lifespan Respite Care Program: Grants to New States

Informational conference call: April 2, 2020 at 2:00 PM ET

Applications due: May 28, 2020

Grantees will be expected to use funds to plan, establish and expand/enhance Lifespan Respite Care systems in their states, including new and planned emergency respite services, training and recruiting respite workers and volunteers and assisting caregivers with gaining access to needed services.

Lifespan Respite Care Program: Technical Assistance and Resource Center

Informational conference call: April 7, 2020 at 1:00 PM ET

Applications due: May 12, 2020

The primary objectives of this funding opportunity are to: (1) further identify, develop, and disseminate training and Technical Assistance resources to ACL's Lifespan Respite Care Program grantees (past, present and future) that address the role of respite as a means to supporting families in their own development of natural supports; (2) strengthen the national capacities at the federal, state and local levels to provide respite services as an essential family support across the age and disability spectrum; and (3) support activities and innovations to develop an evidence base for respite care and related services.

Lifespan Respite Care Program: State Program Enhancement Grants

Informational conference call: April 7, 2020 at 2:00 PM ET

Applications due: May 26, 2020

Grantees will be expected to focus on providing all of the required services (and the optional services as deemed appropriate by the state) as outlined in the Lifespan Respite Care Act, doing so in ways that will ensure increased capacity to meet the objectives of the Act by the end of each grant year.

The Coronavirus has shaken the world to its core. Everyone is affected by it in one way or another. People with disabilities and health conditions are at a higher risk.  From "social distancing" to losing income, people with disabilities have the same concerns as everyone else with perhaps a few more. This article explains some of the additional concerns people may have. 

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Website accessibility is a must these days. Most people are stuck in their homes. That means that more people are using the Internet for literally almost everything. This Article discusses why it's so important to make websites accessible to everyone. 

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The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has opened a new funding opportunity for the Disability and Rehabilitation Research Projects (DRRP) on Technology for Expressive Communication. 

The purpose of the DRRP program is to plan and conduct research, demonstration projects, training, and related activities (including international activities) to develop methods, procedures, and rehabilitation technology that maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities.

DRRP on Technology for Expressive Communication: Under this particular DRRP priority, NIDILRR aims to sponsor research and development activities to generate new knowledge and technology products that can be used to improve the use of expressive language by people with developmental, adult-onset, or acquired communication disabilities, thereby improving community living outcomes.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process.This grant opportunity closes on May 18, 2020.

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at ACL has opened a new funding opportunities for the Disability and Rehabilitation Research Projects (DRRP) on Technology to Promote Independence and Community Living and Knowledge Translation for Employment Research. 

The purpose of the DRRP program is to plan and conduct research, demonstration projects, training, and related activities (including international activities) to develop methods, procedures, and rehabilitation technology that maximize the full inclusion and integration into society, employment, independent living, family support, and economic and social self-sufficiency of individuals with disabilities.

DRRP on Technology to Promote Independence and Community Living: Under this particular DRRP priority, NIDILRR aims to sponsor research and development activities toward technologies that support community living and independent living of people with disabilities – particularly people who are aging with disabilities. With these DRRP grants, NIDILRR has a particular interest in funding research and development toward technologies that support people with disabilities in rural, frontier, or tribal communities.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process.This grant opportunity closes on May 26, 2020.

DRRP on Center on Knowledge Translation for Employment Research: Under this particular DRRP priority, NIDILRR has adopted the framework of knowledge translation (KT) to help promote the effective use of research findings by people with disabilities, policymakers, service providers, and other important research stakeholders. The objective of the funding opportunity is to identify and promote the use of relevant findings and products that can be used to improve employment outcomes of people with disabilities.

View more details and application instructions.

Please visit the link above for more details about the grant opportunity and application process.This grant opportunity closes on May 26, 2020.