Medicaid officials are pushing states to move forward with efforts to rebalance the long-term care services for people with disabilities to favor home-and-community-based services rather than institutions. The Center for Medicare and Medicaid Services recently released a toolkit which includes examples and best practices for increasing transitions from institutions to community, making sure policies align with the market of service providers and improving community living for people who receive Medicaid home-and-community-based services. 

Read more

Can you believe Thanksgiving is in just a few weeks? Where has this year gone? It’s no secret that 2020 will be a year people won’t soon forget. As the holiday season approaches, many people often take time to reflect on the year that has gone by. No doubt that this year was different than we all could have imagined. While most of the issues were undesired, many people found lots of silver linings. In a time where the world is kind of chaotic, there’s a lot of things to be thankful for.  As a person with a significant disability, each Thanksgiving I try to take a few minutes to reflect on the year. Many times, it’s easy to get caught up in the busyness of the holidays, and forget what’s really important. For people with disabilities, it’s so important to reflect on the positives in our lives.

As I begin to think about the year that has gone by, I’m amazed by all that has happened. For starters, in January, I was having so many care problems. I began the process of switching to Family Care in hopes it’d be easier. As it turned out, that wasn’t the case. It was good to learn how it works, but it wasn’t going to work for my current situation. It was very disappointing to find out that there is no real good care program for people like myself. I’m still shocked by this, but it just confirms more advocacy is needed. Timing was impeccable in March when my parents and I decided to start in IRIS. All this was happening right when the pandemic hit.

Everything was shut down in the beginning of March. Most of my caregivers went back to their hometowns because the colleges were shutdown. I’m fortunate that I was able to move in with my parents for three months. If they weren’t able to take care of me, I would have ended up in a nursing facility.  As much as I complained about being at their house on their schedule, I’m very thankful that I was able to stay with them.

When we realized that the pandemic wasn’t going anywhere anytime soon, my mom and I came up with different care shift schedule to try. We interviewed and hired several new workers. I’m very shocked by how well things have been going. This has been probably the best four or five month stretch we’ve had in years. Now, I know that after the holidays, we’ll have to hire some new people because a few of my current workers are moving on, but it gives me hope that this will continue to be doable.

In June, I became an aunt for the first time. As hard as it was emotionally for me, words can’t describe how amazing my nephew is. He brings so much joy to the family. I’m so thankful that I’ll be able to watch him grow up and be part of his life.

I haven’t shared anything about this because I didn’t want people to feel bad, but in September, I had COVID – 19. It ran through most of my workers and I. I had to go to my parents for about three weeks. Thankfully, my symptoms were very mild, and somehow, neither of my parents got it. Coincidently, during that time, I ended up in the hospital with a gastrointestinal issue, but, thankfully, I didn’t need surgery this time.

As weird as this sounds, I’m very thankful that so much has gone virtual this year. As I’ve discussed in previous entries, for me, not having to worry about transportation or cares, I’m able to attend many more events and meetings than I otherwise would have.  Like everyone else, I miss seeing people in-person, but, with everything being virtual, I have more opportunities to participate in things.

The key word is thankful. With so much going on in the world, sometimes it’s hard to see the positives in life. I’m incredibly thankful for the life I have. Things could be so much worse. It’s because of the overwhelming support from my amazing friends and family that I’m able to be as successful as I am. Unfortunately, I know everyone does not have that support. It’s sad to think about and hear stories about people not having that kind of support. Do I find myself still being down and wishing things were different? Of course, I do. However, in those times I have to remember what I have and what I’ve been able to accomplish.

This Thanksgiving, I challenge each of you to take five minutes and reflect on the good things that happened this year. Yes, there were a lot of unpleasant things that occurred, but I’m willing to bet if we truly think about it, the good outweigh the bad.  I believe it’s true - - when bad things happen, it brings out the good in people. This year is the perfect example of it. We need to remember to be thankful for what we have. Happy Thanksgiving, everyone. I’m thankful for what each of you do for the disability community.

***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.

Nearly 1 in 4 voters have disabilities. The Disability Vote Coalition is working hard to help help them vote no matter what the problem is. Everything from transportation to the polls, to absentee ballots not being accessible, not knowing what resources are available... The list goes on. The Coalition provides multiple resources for people with disabilities. 

Read more

Coming Soon! Apply to a New Challenge Competition Starting November 20 for Improving the Direct Support Professional Workforce.

ACL is looking for inventive solutions to strengthen the direct support professional (DSP) workforce and to improve the overall quality of home- and community-based services (HCBS) for individuals with intellectual and developmental disabilities (ID/DD). Our goal is to encourage the development of innovative business models that will help to stabilize the DSP labor market.

The Problem

The DSP workforce provides vital services that ensure Americans with ID/DD have the support they need to live independently in the community. Demand for these essential professionals is at an all-time high and growing. With an average turnover rate of 45% and significant challenges to recruiting and retaining DSPs, the demand far exceeds supply. The University of Minnesota’s Institute for Community Integration estimates there are 1.3 million DSPs supporting individuals with ID/DD. To sustain this level of service at the current turnover rates, 574,200 new DSPs need to be hired into the workforce every year. In addition, at least another 167,000 would be needed to serve individuals who are on waiting lists for HCBS[1].

Due to the lack of stability of the workforce, many people are unable to obtain all of the services they need, which limits full participation and true inclusion in society. It also significantly impacts the quality of HCBS people with ID/DD living in the community[2]. There are multiple reasons for difficulties in attracting and retaining DSPs, including; the rising need for services creating competition for workers, shifts in the types of services needed, low wages, lack of benefits, and lack of training and promotion opportunities.

The Prize Competition 

ACL is seeking innovative business models to overcome these challenges to improve the stability and increase the size and capability of the DSP workforce.

“Every day, Americans with disabilities live, work, learn, grow, and enjoy life in their communities. For many of us, direct support professionals are critical to our ability to do those things safely and freely,” said Julie Hocker, Commissioner of ACL’s Administration on Disabilities. “With this prize competition, ACL is challenging the industry to re-imagine how we recruit, develop, and grow DSPs to ensure that all Americans with disabilities have access to the services they need.”

The competition will include three phases, with cash prizes awarded to winners in each phase. All winners will receive mentorship from experts in the field and winners’ business models will be featured in Challenge materials.   

Phase 1 Submission Timeline

Submissions can be entered starting November 20, 2020, and must be received by 5:00 PM ET on February 12, 2021.

Watch the ACL webpage for more information for additional details – judging criteria and descriptions of the competition phases will be added soon.

Every November, National Family Caregivers Month (NFCM) recognizes and honors family caregivers across the country. Led by Caregiver Action Network, it is also an opportunity to raise awareness of caregiving issues, educate communities, and increase support for caregivers.

ACL is a proud observer of NFCM, but works year-round through programs and councils to engage, support, and empower caregivers. For NFCM 2020, ACL created a special materials page to help you join us as we #RAISEcaregiving next month.

The election is less than a week away. Many people with disabilities face additional challenges when voting. From absentee ballots not being accessible, to polling places not being accommodating, to issues filling out the ballot... The list goes on and on. There is hope from disability organizations that the Wisconsin Legislature will soon improve voting accessibility! 

Read more

HHS's Office of the Assistant Secretary for Preparedness and Response (ASPR) has a new online training on older adults and disasters that is designed to improve public health and emergency medical responders’ capability to address the access and functional needs of community-dwelling older adults in disasters.

This new training complements ASPR's previously-released Access and Functional Needs (AFN) web-based training defines the concept and requirements for addressing the AFN of at-risk individuals, and provides tools and resources to help you address the AFN of at-risk individuals in your community during disaster preparedness, response, and recovery activities.

The trainings are at-your-own-pace and free, although participants will need to create an account in the TRAIN system to access training. 

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:

• Pam Runge Malin
• Erica Andres
• Pam Jenson
• Monica and Francisco Javier Lopez Sr,
• Ashley Mathy
• Philip Temme
• Cindy Bentley
  

Parents of children with disabilities are facing difficult decisions about how to keep their children safe and learning. To help, Stanford University has developed a Back-to-Safe Communities of Learning (SCOL) Decision Guide in English and Spanish. The tool was designed with and for parents of children with special healthcare needs based on input from public-health experts, parents, and health providers. It is meant to serve as a conversation starter and to guide discussion between a parent and a trusted advisor, such as a pediatric health provider.

The Social Security Administration recently announced that there will be a 1.3% increase in Supplement Social Security Income and other Social Security benefits in 2021. The increase is a result of the annual cost-of-living adjustment due to inflation. It's slightly lower than last year's increase.  

Read more