This study’s aim was to examine how states across the United States implemented self-direction in their Medicaid home and community‐based services (HCBS) 1915(c) waiver programs for people with intellectual and developmental disabilities (IDD) in fiscal year (FY) 2021. Eighty percent of states offered self-direction in their HCBS programs. Across the United States, the goal was to have 13 percent of people with IDD receiving HCBS self-direct. In FY2021, 29 percent of services could be self-directed and 36 percent of funding was projected for services eligible for self-direction. There were vast differences in how self-direction was implemented across states. For example, among the states that allowed self-direction, goals for self-direction by state ranged from 0.9 percent to 47.5 percent of people with IDD receiving HCBS. Projected spending for services eligible for self-direction varied by state from 0.1 percent to 100 percent. 

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Self-Determination Network News:

December 2024

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

We absolutely loved seeing and meeting so many of you at the Self-Determination Conference at the end of October. We want to thank everyone who participated in the Stewing with Stacy raffle, and we welcome all the new members who joined the Network! It was a great Conference again this year!  How did you like it? There were a ton of great sessions and events.  This year’s theme was A Seat At The Table: Nothing About Us, Without Us! What was your favorite part? What resources did you find particularly helpful? Did something really inspire you? Let's keep the conversation going! Share your comments, questions, and ideas here.

The session recordings and materials from the 2024 Self-Determination Conference are now available online! If you weren't able to make it this year, save the date for 2025 and join us October 20-22, 2025!

For the first time since the IRIS Program started in 2008, a group of IRIS participants, families, self-direction advocates and other stakeholders spent a day together in November 2023 to discuss what is working well in IRIS and what could be improved. In addition, the group identified a number of recommendations for how to achieve improvements in the program. A public report summarizing the consensus from that gathering has now been released and submitted to the Wisconsin Department of Human Services, along with a proposal to create a broad-based task force to work through the issues and recommendations. Read the full report.

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.

In November, we shined the spotlight on Peter. This avid Wisconsin sports enthusiast loves connecting with others and hearing them share their story.  Check out this month's Member Spotlight to get to know Peter.

For December, we're shining the spotlight on Katrina. This video game obsessed self-advocate is the coordinator of the Self Advocacy Action committee at the University of Minnesota-Twin Cities Institute on Community Integration. Stop by this month's Member Spotlight to get to know Katrina.    

Who should we shine the spotlight on next?

Stacy’s Journal

Take five minutes to check out what's happening on the Self-Determination Network:

• Advancing Independence and Community Integration for All: The President’s Committee for People with Intellectual Disabilities (PCPID) has prioritized high-quality home and community-based services for their report to the president with a focus on four key areas: direct support professionals, employment, community living, and federal support. Read the report.
• Fear of Losing Benefits: Fear of losing Medicaid benefits is a factor in debates over law allowing certain workers with disabilities to be paid lower than minimum wage — advocates urge Wisconsin lawmakers to pursue expansion. Learn why.
• Direct Care Wages Factsheet: This factsheet presents an analysis of wage disparities between direct care workers and similar occupations across the United States in 2023, as well as trends in this wage gap from 2014 to 2023. Take a look at it.
• Increase in Employment: Federal data shows that the number of people with disabilities finding employment is increasing. Find out what advocates credit the rise to.
• The Sandwich Gap: There’s a growing number of us who are Millennials or Generation X and struggle to balance the obligations of parenting school-age children, caring for elderly loved ones, and working for a living. Read about what a recent study found.
• Airline Fined over Treatment of Passengers with Disabilities:  One airline has agreed to a record $50 million settlement with the U.S. Department of Transportation for violating laws that protect airline passengers with disabilities. Find out what else they are accused of.
• Experiences of Direct Care Workers and Family Caregivers: This brief includes findings from focus groups with direct care workers and family caregivers who provide home-and-community-based services. Learn what the groups found.
• Who Are the Direct Care Workers?: This analysis provides an overview of demographic information, wages, and health care coverage of direct care workers. Find out what this analysis found.
• Sponsor and Exhibitor Registration Open: Registration for sponsors and exhibitors for the Circles of Life Conference is now open. Early bird registration ends in February!
• Myths of Self-Directed Care: Enrollment and awareness of self-directed care remain low. Read about some of the myths.
• Workforce Shortages Top the List: State legislatures passed over 3,000 health policy bills in 2024, focusing on healthcare workforce shortages, Medicaid changes, and youth mental health. Learn what key actions include.
• Caregiver Impact Report: This report lists hundreds of actions that federal agencies, state and local governments, businesses, and communities that can be taken to improve caregivers' lives.. Learn what five goals the strategy includes.

Upcoming Events 

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

• Webinar: From Standards to Support: Understanding the Access Board’s Role in Accessibility: January 9th, 1:30p.m. to 3p.m., Virtual
• Disability Advocacy Day 2025: March 12th, Monona Terrace and State Capitol, Madison WI
• National Symposium on Quality Employment 2025: May 20th-22nd, Memorial Union, Madison WI 

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.

A faulty appliance. An event that flopped. A trial of a service that didn’t work out. A test-run of something that failed. There are all sorts of situations where something didn’t go as planned or hoped. In most scenarios, the problem can be fixed or there are other options available. When something doesn’t work out as one expected or hoped, it can be frustrating. Regardless of what it is, people usually aren’t happy about something going wrong. Everybody feels that way, and people with disabilities are no different.   We experience the same emotions everyone else does when things don’t go right.

In my journal entry last month, I explained how two big life changes were happening at the same time—I was moving into a new apartment and I had started with a care agency. The move went well and I absolutely love my apartment. Unfortunately, I can’t say the same for the agency. Going into it, I was prepared for challenges because I had gone through this process a couple times before.  The last two months were simply put, a nightmare.

As I previously mentioned, I was moving from part-time to an agency covering nearly full time, with two eight hour shifts. In early September, the agency promised to staff 16 hours daily, and this was to begin the first week of October.  A budget amendment had to be completed for more supportive home care hours, and this took time to get approved. Then I had to be rescreened for personal care hours.  This was a huge waste of time because, I had to be rescreened for the services I already had….hoops to jump through in this process.  Meanwhile, the agency was posting and hiring people specifically for my cares. Their plan was to hire four people, two on day shifts and two on afternoon-evening shifts.  Needless to say, that never happened.  We set up a training day for three people, only two of whom showed up.  Looking back, that should have been the first red flag. The plan was to have people hired to become “trainers of new staff.” We finally figured out a start date, and at that time, I was asked to release all my old faithful aides, some of whom had worked for me for over seven years.

Now to the staff that was hired.  The two initially trained were very capable and did have some experience, however we shortly found out that one was due to have surgery as well as going on vacation and the other had no way of getting to my place on time.  The third person hired had experience but I was forced to report her for hygiene issues and both she and I felt that she was not able to handle my needs.  Next, the agency was going to try to fill shifts with two people who had residential experience, but were only going to be fill-ins once in a while.  So, in the first two weeks starting, they only had two people, and only two days were fully staffed of those 14 days.  This meant that my parents came up there daily either to fill those shifts- they even stayed overnight a couple times due to consecutive days not being filled.  Admittedly, I was ready to switch back after a day or two, but we felt we had to give them a chance and at least a month or month and a half to prove to us that they could do this.  There were literally over a hundred phone calls between my mom and the personnel director as to what was going on each day. The next three weeks were no different.  I would go to my parents’ home when the agency couldn’t fill shifts, so in that time, only two more days were completely staffed.  Therefore, in a bit over a month, only four days were staffed, and either my parents came up or I would go to their home. The final straw was when one of the two initial hires called in sick four nights in a row, and they couldn’t find anyone to staff those shifts. Enough was enough, promises made were not kept! My parents and I made the decision to dismiss the agency and to go back to hiring our own people.  Even though we knew it would be a lot to go back, we all slept better that night, knowing we were back in control.

Basically, we knew this would be like starting all over again, but I didn’t realize how long it would take to switch back.  Everything from getting the personal care screen released from the agency to completing a new rescreening, to getting doctor’s orders, and budget amendments- it’s been another month of waiting. 

I contacted my old workers, and, thankfully, a couple were willing to come back.  Now, we are in the process of interviewing and hiring new people again.  I’m hoping by early January that I’m able to stay and enjoy my new apartment for more than two nights in a row!

What did we learn from this fiasco? When something sounds too good to be true, it probably is. Second, the long-term care system continues to have roadblocks whether you’re working with an agency or hiring your own aides.  Third, be grateful for the support system you have with family and/or friends! Finally, this experience just amplifies the need to continue to advocate for a better overall system in 2025 and beyond!

***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.

Meet Katrina. This video game obsessed self-advocate is the coordinator of the Self Advocacy Action committee at the University of Minnesota-Twin Cities Institute on Community Integration. She recently finished a class and she’s looking forward to getting more involved with research work in the future. We’re so fortune to have her as a member of the Network!

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

Katrina shares that she lives with Cerebral Palsy and uses a power wheelchair for primary community mobility. She works at the University of Minnesota-Twin Cities Institute on Community Integration. She lives independently in an apartment and utilizes Home and Community Based Services to do so.

Katrina is the coordinator of the Self Advocacy Action committee at ICI. She explains that the purpose of that committee is to make sure that all of the policy and research products produced at the institute are “vetted” by individuals who live with Intellectual and Developmental Disabilities. “We meet once per month and focus on a specific product. All are welcome at our meetings,” she tells us.

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

Katrina explains that their mission as a committee is to improve self-determination (and the knowledge base around it) for people living with I/DD and other disabilities. She joined this network to become more connected to similar efforts and to learn about best practices around self-determination.

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

Katrina is just now finishing a class that is focused on lived experience partnerships for research outcomes in Cerebral Palsy. “I am excited to hopefully become more involved in that work in the future,” she says.

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

Katrina encourages people who want to be more self-determined to educate themselves about the choices available and the topic that they care about. Knowing what options are available is really important in self-determination.

What are some of your hobbies?

In her spare time, Katrina loves going to Target and playing video games. She also loves helping people. “One time I got to help someone pick out a video game at Target. It was a really great day,” she exclaims!

***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.

State legislatures passed over 3,000 health policy bills in 2024, focusing on healthcare workforce shortages, Medicaid changes, and youth mental health. Key actions included recruiting behavioral health workers, expanding Medicaid services, and addressing rising youth mental health concerns. AI in healthcare and drug affordability emerged as new priorities.

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Many people with disabilities prefer to self-direct their care. Yet, because overall enrollment and awareness remain relatively low. There are many misconceptions about self-direction. This is an interesting opinion article trying to debunk some of the myths about self-direction.

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