Meet Cynthia. Working to support people with disabilities for over four decades, she has seen many positive changes in the community. She encourages people to make use of the Aging and Disability Resource Centers (ADRCs). We’re so fortune to have her as a member of the Self-Determination Network!

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

Cynthia is an Information and Assistance/ADRC Specialist for the Aging and Disability Resource Center of Sheboygan County with a focus on serving adults with intellectual and development disabilities. She has been supporting people with disabilities for over 40 years. She explains that she remembers the days before the repatriation of individuals from ICFs-MR (now called ICFs-IDD) back to their home communities and nearer to family with work opportunities being mostly restricted to “Sheltered Workshops”. She worked at a camp during a summer during college that catered to people with I/DD and after college worked at two different privately owned ICFs-IDD in Milwaukee, a pre-vocational program then known as a Sheltered Workshop in a Milwaukee suburb, then a Case Manger for Sheboygan County Health and Human Services Developmental Disabilities Services (which included two years contracted to an MCO) and finally the ADRC of Sheboygan County for the past almost 12 years. “If someone asked me when I was 20 what my career would be, I NEVER would have thought, let alone answered, “to be a Social Worker focusing on people with I/DD”, she shares. She changed my major after the summer working at the camp.  

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

Cynthia joined the Self-Determination Network for a few reasons.  She doesn’t work in a major metropolitan area, so our resources are not as extensive as in other areas.  She explains that it can also be very insular since many employees from the different local agencies have been collaborating for at least two decades.  It is helpful to find out what other communities are doing that is positive or innovative and that maybe we can incorporate on a local level. Her work currently focuses on emerging youth with disabilities and assisting in the transition to adulthood. She shares that it is wonderful to see the generational differences. They have gone from trying to convince people that it is ok to make their own decisions and work towards their own goals to younger folks knowing that it is their right to do so. She also manages their agency’s social media, so she’s always looking for resources to share with others, even if they have to drive to access it.

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

Cynthia has seen many changes in the past 40 years from the attitude and actions of service providers and family caregivers, language and terminology, types of service provided, Long Term Care Funding and an almost total disregard of self-determination to the embracing of self-direction.  It’s not universal, there is still learned dependence amongst some people with I/DD and a tendency for some family caregivers to lean towards trying to block all risk for their loved one which is an obstacle to self-determination. 

She explains that she had to evolve as well and she clearly recalls participating in meetings in Milwaukee County where the county staff and residential providers made decisions about who had empty beds, who needed to move to make room for someone else and basically moving people around to make the system work rather than addressing individual preferences. She realized that the people she worked with in the ICF-MR and had referred for residential services had little to no chance to achieve their dream of moving out to a something more independent.

At the request of her then employer, she had also spent a few weeks with a journalist from a national magazine who was doing a series of articles about people in Wisconsin who lived with disabilities and how their wishes/needs/wants were or were not being met.  She introduced him to people with I/DD who wanted to tell their stories and helped him make connections in the community with involved agencies.  In reading his series, it was eye-opening for me to read things from the perspective of the interviewees. There were things that she thought were positive or showed progress that from the perspective of the person were not. 

“These were some of the events that helped me evolve as well as being able to observe the positive changes in lives of people who had been able to express their wants and needs and, in some cases, self-direct their funding,” she says. When she was a case manager, she really enjoyed helping people (and their families) realize and embrace their lives outside of large institutions when ICFs-IDD across the state were closed. “People moved from fear of the unknown and fear of risk to more fully embracing what the world had to offer,” she explains. 

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

Cynthia encourages everyone to use the network of Aging and Disability Resource Centers across the state. She explains that they are underutilized and ADRCs have or can find information about all kinds of resources. ABLE accounts and Special Needs Trusts are also underutilized.  She also firmly believes that when working with Long-Term Care funding, it is important to work with staff who have a knowledge base and experience in working with people with I/DD; although some skills are universal, it is a specialty and people should request a case manager or ICA who has this kind of experience.

She would also like to mention the movie, “Crip Camp.”  It’s a great documentary that really shows how a group of people living with disabilities started the self-determination movement in the 1970’s.

What are some of your hobbies?

Right now, Cynthia’s main hobby during the pandemic is contemplating and planning for her life after retirement. She really enjoys being by water.  “If you live in a part of the state that is not on a Great Lake, you really need to visit one because it is unlike anything else………except maybe the ocean,” she tells us.

***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.

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People with disabilities have faced multiple challenges during the pandemic with things such as education, employment, and physical and mental health. Though little research has been done, it is widely known that this population is at significantly higher risk of hospitalization and death due to COVID -19; yet, many states haven't made prioritized this population for the vaccine. To help with this public health issue, the National Association of Councils on Development Disabilities has created a website to help people with disabilities find trusted resources on the vaccine in their area. 

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The Centers for Disease Control and Prevention is offering up new guidance for day centers and the people with disabilities they’re serving during the ongoing COVID-19 pandemic. It comes in two parts--one for administration and staff and the other for clients and caregivers. It's recommending that day centers follow social distancing and safety precautions when possible. It's also recommended that centers modify layouts, install barriers, and do as many outdoor activities as possible. 

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President Biden is planning to shift his focus from COVID-19 to his campaign promises. With the vaccines quickly being rolled out, it seems that Biden is seeking to address disability rights. President Biden recently named a Disability Policy Director to sit on the Domestic Policy Council, a historic move. This Director, Kimberly Knackstedt, was selected based on a perceived wealth of experience that the President believes will allow her to better serve and advocate for the equitable treatment of the disability community.

One of Knackstedt's stated goals is to put people with disabilities at the beginning of policy development. Rather than retrofitting policies to the disabled community as an afterthought, disabled persons will now be at the forefront of conversation, with such issues as climate and education. This is especially crucial in rebuilding post-pandemic due to the disparate effects of COVID-19 on the disabled community. Additionally, with the lasting effects of the virus itself, the community may extend to even more Americans than before as these lasting effects can cause lifelong health concerns for those afflicted.

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A new brief issued by the Center for American Progress (CAP) announced that states with "one fair wage" have lower poverty rates. States who are known as having "one fair wage" are those that pay all tipped, disabled, and temporary teenage workers the same minimum wage as all other workers. States that do not pay all workers the same are states that observe a subminimum wage, or a wage that legally allows employers to pay tipped, disabled, and temporary teenage workers less than other minimum wage workers.

This study from CAP also found that overall, businesses in tipped industries experience higher employment growth in states with one fair wage. Small businesses in these states also saw faster employment growth. More importantly, the study points out that marginalized people such as women and people of color are overrepresented in tipped industries. Additionally, disabled workers are paid less based on disability status under a subminimum wage. These facts suggest that social inequity resulting from poverty may also be partially addressed by abolishing the subminimum wage and ensuring that all states pay one fair wage to all their workers.

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President Biden's plan to expand Medicaid' s Home-and-community-based services for people receiving long-term care and supports has already achieved one major goal--it has leaders talking about the need to better care for older adults and younger people with disabilities. It has brought up many important questions about Long-term Care Services. 

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ACL has opened two new funding opportunities under the Lifespan Respite Care Program. Lifespan Respite Care Programs are coordinated systems of accessible, community-based respite care services that reduce duplication of effort and help to develop respite care infrastructures at the state and local levels.

Grants to New States and States Re-Establishing Their Core Respite Infrastructures

Application deadline: May 17, 2021

View more details and application instructions

Grant Opportunity HHS-2021-ACL-AOA-LRLR-0046

Applicants to this funding opportunity will propose approaches to, at a minimum, expand and enhance, or re-establish their core respite infrastructure. This grant is intended to improve the statewide dissemination and coordination of respite care; develop, modify, or otherwise adapt respite and related services to a COVID19/post-COVID-19 environment; and provide, supplement, or improve equitable access and quality of respite care services to family caregivers and care recipients.

Informational Conference Call

April 13, 2021, 2:00 PM ET

Conference Call Number: 888-469-0989

Pass Code: 8200188#

State Program Enhancement Grants

Application deadline: May 21, 2021

View more details and application instructions

Grant Opportunity HHS-2021-ACL-AOA-LRLI-0045

Applicants to this funding opportunity will propose approaches for advancing their State Lifespan Respite Systems. Particular attention will focus on direct service provision, incorporating lessons learned from the COVID-19 pandemic where appropriate; continued systems development; strengthened collaborations and partnerships; paid and volunteer respite provider training; identification and reduction of gaps in current services; and targeting underserved populations across the lifespan, with particular emphasis on addressing those most impacted by COVID-19.

Informational Conference Call

April 16, 2021, 2:00 PM ET

Conference Call Number: 888-469-0989

Pass Code: 8200188#

The Federal Communications Commission (FCC) recently proposed rules to improve the way the public receives emergency alerts on their mobile phones, televisions, and radios.

The nation’s Emergency Alert System and Wireless Emergency Alerts help keep the public safe and informed and are of ever-increasing importance given the emergencies and disasters Americans have faced in recent years.  

In 2018, however, a false emergency alert in Hawaii mistakenly warned of an incoming ballistic missile and highlighted the need to improve these systems. The National Defense Authorization Act for Fiscal Year 2021 subsequently charged the Commission with adopting rules to strengthen emergency alerting in various areas. Consistent with this directive, the Commission has adopted a Notice Proposed Rulemaking to ensure that more people receive relevant emergency alerts, enable government agencies to report false alerts when they occur, and improve the way states plan for emergency alerts.  

Specifically, the Commission proposed to

• Combine the current “Presidential Alerts” category, which is non-optional on devices that receive Wireless Emergency Alerts, with alerts from the FEMA Administrator. The new non-optional alert class would be called “National Alerts.” 
• Encourage all states to form State Emergency Communications Committees, which help administer alerting on the state level, or to review the composition and governance of existing committees, as well as require these committees to certify that they held a meeting in the past year.
• Provide a checklist of information that should be included in annual submissions of state Emergency Alert System plans and amend the process for Commission review of those plans.
• Specify that government agencies may report false emergency alerts to the FCC’s 24/7 Operations Center.
• Require and ensure that Emergency Alert System participants can repeat certain alerts over television and radio when the government alert originator requests it.

Also consistent with the new legislation, the Commission adopted a Notice of Inquiry to explore the technical feasibility delivering Emergency Alert System alerts through the Internet, including streaming services, and whether it is feasible for Emergency Alert System participants to leverage the Internet to offer advanced alerting capabilities to the public.

Interested parties may file comments by accessing the Electronic Comment Filing System at https://www.fcc.gov/ecfs/filings. All filings must reference PS Docket Nos. 15-91 and 15-94. 

People with disabilities who need assistance to file comments online at https://www.fcc.gov/ecfs/filings may request assistance by email to FCC504@fcc.gov. 

Notice of Inquiry (NOI) Comments Due:  May 14, 2021

NOI Reply Comments Due:  June 14, 2021