News

NCAPPS compiled a list of helpful resources for person-centered practices and related activities to enhance work supporting people with disabilities and older adults with long-term services needs.

Learn more about the resources and follow the links for more information.

Person-Centered Practices in the National Core Indicators Data. (November 2021). This resource provides examples of existing measures of outcomes of person-centered supports. It demonstrates how a state could use NCI data to understand person-centered outcomes of supports within their state with direct reference to the CMS home- and community-based settings.

Person-Centered Practice as Anchor and Beacon: Pandemic Wisdom from the NCAPPS Community. (March 2021) In the early days of the COVID-19 pandemic, NCAPPS reached out to its network to invite members to film brief videos responding to how we hold on to - and even expand - person-centered practices during a global pandemic. These videos are now featured as part of the NCAPPS Shorts collection. NCAPPS invited all participants to co-create a journal article exploring the themes that emerged from the videos. Twelve people - a mix of disabled and non-disabled NCAPPS staff and colleagues, came together to create the paper. The paper - and the process - was a very collaborative effort and is a reminder of the power of community and connection in advancing person-centered thinking, planning, and practice.

Removing Barriers to Healthcare: A New Era for House Calls? (November 2021) This resources provides ideas for health care professionals, leaders, states and community stakeholders to think about as we dream of a new, and more accessible normal in the era of COVID-19. 

Asset Mapping Toolkit. (June 2020) This toolkit is valuable for those working to connect in a meaningful way with the stakeholder network in their area. 

Five Competency Domains for Staff Who Facilitate Person-Centered Planning. (November 2020) Given the importance of choice and self-determination in any person-centered system, it is important that those who provide support understand and embrace the skills and values necessary to maximize the participants ability to make decisions and exercise agency in their lives.

Better Together: Brain Injury Survivors Building Community & Making a Difference. (October 2021) While it feels safe to assume that we all agree that leadership from and involvement by individuals with lived experience is a key ingredient to making a project successful it is all to easy to make the invite and then be confused as to why the project was not as successful as you had hoped. This webinar provided tangible advice and tools from people with lived experience about how to make participation on teams accessible for people with brain injuries. It provided great advice that is relevant for making any team or group process accessible to everyone involved.

Person-Centered Supports in Popular Culture. (August 2021) It can be important that all people get to see themselves reflected in media depictions, and unfortunately these haven’t always featured people with disabilities. 

Doing With, Not Doing For: What It Takes to Facilitate Person-Centered Planning. (January 2021) This webinar is a companion to the Five Competency Domains for Staff Who Facilitate Person-Centered Planning NCAPPS resource. The five competency domains are incredibly useful when seeking to hire or train facilitators in person-centered planning, developing quality standards, or helping people who access services and their caregivers learn about what they should expect from the planning process.

“Sticks and stones may break my bones, but words will never hurt me.” Many people have heard that saying as kids; however, we know that’s not true. Words hurt. In today’s world, we feel the need to put labels on people more than ever before. Racial labels, economic labels, sexuality labels, political labels… the list goes on and on. There are occasions when labeling people is necessary and helpful, but, more times than not, putting a label on someone causes hurtful feelings and an unpleasant stigma. While belonging to a minority is becoming more common in today’s society, being singled out is never fun.

A quick Google search revealed that one billion people live with a disability in the world. Yet, we are still considered a minority. For years, there has been a debate among the disability community as to how we identify ourselves as persons with disabilities and how we want others to address us when talking about our situation. Years ago, terms such as “handicapped,” “crippled,” “retard,” and “disabled” were used to describe persons with a disability.

In the 90s and early 2000s, the people first language began. It was meant to identify the person before the disability. For example, instead of saying a “disabled person,” you’d say a “person with a disability.”  Of course, thankfully, the world, “retard,” has slowly faded away when identifying someone who has an intellectual disability. For a few years, “cognitive disability” was used, but now “intellectual disability” has replaced it.

A few years ago, a new movement started going back to labeling people with disabilities as “disabled.” People with disabilities want to be considered a group in society and want to communicate that disability is a normal part of life. In other words, there’s nothing wrong with being “disabled.” People want the general population to know being “disabled” is okay. Many people with disabilities consider themselves part of a unique minority and are proud of it.

You may have noticed up to this point in the article that I’ve not said “disabled people.”  This was on purpose. Personally, I don’t like the term “disabled” used to describe anyone. When I think of the word “disabled,” I think of something that does not work. A disabled car, for an example. What does it portray when we use the same word to describe a broken-down vehicle that we do a person? Yes, I understand that we use adjectives to describe different things all the time, but, to me, “disabled” never should be used to describe a person. Nobody is completely “disabled.”  In my opinion, the word “disabled” has a negative connotation in today’s world. Regardless of the circumstances, I believe that every single person that’s born on this earth has the ability to do something.

I’m also not fond of the idea of moving away from people first language. While I understand the idea of being seen as collective group of people in society, I like to think people see the person I am rather than a “disabled person.” Do I identity as a person with a disability? Sure, and obviously it’s a huge part of my life. However, my disability doesn’t define the person I am. When this topic comes up, I think of a quote from a children’s book I read years ago.

“I’m a person who just happens to have a disability, but that doesn’t mean that I’m a disabled person.“
~Golden Daffodils by Marilyn Gould

I understand that some people may think this contradicts being a disability self-advocate, and I can’t argue that they’re wrong; however, being an advocate and preferring a certain label are two different things. I still strongly advocate for people with disabilities; I just prefer to be categorized as someone living with a disability rather than a disabled person.

Many, in fact most, people with disabilities have a different opinion about this issue. I totally respect that. I do understand why people want that commodity of being viewed as a group or culture. There have been lots of discussions about this in my disability Facebook groups, and there are so many different opinions about this. It’s one of those controversial topics that will be debated forever because there are no right answers. Stepping back, it’s unfortunate that we are forced to put labels on everyone for everything. In a perfect world, we’d have no labels and one’s name would be enough, but that’s not the case. We have to respect each other’s preferences and be open to learning about differences. As I always say, we only get one chance to live. We have to remember to make it count not only for ourselves, but for others which means doing our part in respecting each other’s preferences.

***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.

The Wisconsin Youth Leadership Forum (YLF) is a week-long, overnight leadership training and career awareness program for high school sophomores, juniors and seniors with disabilities.

When/Where:

July 10 – 15, 2022 at Edgewood College in Madison, WI  

The Youth Leadership Forum is for:

• Students who show leadership potential by being active in their school and community
• Students who have a disability (physical, learning, cognitive, emotional, sensory, etc.)
• Wisconsin residents
• Students who are currently sophomores, juniors or seniors in high school 

Why Attend the Youth Leadership Forum:

• Learn more about college and career options
• Make connections with other young leaders in our state. 
• Meet your state legislator
• Connect with energetic staff and speakers from across the state
• Have fun at a dance and talent show and many other memories you’ll never forget!   

To Apply:

Complete the application by April 1, 2022. 

Contact Jenny Neugart at jennifer.neugart@ wisconsin.gov if you have any questions. 

YLF Applications 

More information

New research shows that almost half of businesses believe that the key barrier to hiring people with disabilities is the lack of candidates. However, misconceptions, lack of representation, and taboos continue to be a significant factor in recruitment policies. 

Read more

The National Alliance for Caregiving recently released Caregiving in a Diverse America: Understanding the Systemic Challenges Facing Family Caregivers in the U.S., a report based on results of the Caregiving in the U.S. 2020 study. The report highlights disparities in support, caregiving intensity, health and financial impacts among diverse caregivers. The report emphasizes the importance of considering culture and identity when facilitating access to programs, services and resources and tailoring support to meet the unique needs of caregivers. With much more work to be done, the report identifies key themes and areas of future research that are needed to meaningfully improve the caregiver experience. 

View report

Direct care workers provide hands-on support to older adults and people with disabilities. For years, there has been a national shortage. Low wages, long hours, few benefits, and the demanding nature of the work has led to high turnover rates and this shortage. A recent report done by the Center for Health Care Strategies drew four key recommendations. 

1.. Focus and organize state-level and advocacy efforts related to the direct care workforce shortage- The commitment of state leaders to a common goal is very important for making progress in the workforce shortage.  

2. Use federal funding and flexibilities- the Build Back Better Act has potential, but is uncertain. There are other ways to access federal funding and flexibilities to support the workforce. 

3. Prioritize DCW-related goals in Medicaid managed care contracts- Many states use managed care contracts for Medicaid services.  States could use their contracts to expand and strengthen their workforce. 

4. Recognize the deep value and importance of the profession-  From the start, caregiving isn't consistently valued. States could promote the value and importance of the profession. 

Read more

The White House Office of Science and Technology Policy (OSTP) has published a request for information (RFI) soliciting information on how digital health technologies are used, or could be used in the future, to transform community health, individual wellness, and health equity. Comments are due by 5:00 PM ET on February 28 and can be submitted via email to connectedhealth@ostp.eop.gov or via phone at 202-456-3030. 

The RFI specifically requests input on several areas of interest to ACL’s networks, including:

• Barriers to the use of digital health technologies in community-based settings faced by individuals or organizations. Read more

Advocates are hopeful that the Build Back Better Act will move forward in some form. The Act aims to expand access to services for people with disabilities. This would include better pay for home-based care Workers. Lawmakers say Build Back Better will probably pass year, but it's unclear whether the $150 million tentatively saved for Medicaid Home-and-community-based services will remain. 

Read more

Some workers supporting people with developmental disabilities across the nation will still be required to be vaccinated against COVID-19 despite a recent ruling from the U.S. Supreme Court blocking a wider mandate. The high court struck down a mandate requiring vaccines or regular testing for employees of big companies The court upheld a rule requiring workers at facilities, home health agencies, and other providers  that receive Medicaid or Medicare funding to be vaccinated. 

Read more

After a recent defeat, Disability Rights Wisconsin is moving forward. The recent package includes a paper ballot mandate which poses a problem for some voters with disabilities. The current law does not include such mandate and some voters already use accessible voting machines. 

Read more