The United States Capitol Building

Congress’s End-of-Year Legislation Includes Disability Priorities and Leaves Unfinished Business

As Congress wrapped its work for the year, disability advocates pushed for progress on a variety of priorities. Congress has now passed a package that includes some important victories but leaves others out.

One of the biggest wins is an extension of the Money Follows the Person program, which helps people transition out of institutions and nursing homes, and back to their communities.

The Money Follows the Person (MFP) program provides grants to states to transition Medicaid participants from institutions into the community. MFP has moved more than 107,000 seniors and individuals with disabilities out of these institutions and has helped 43 states and the District of Columbia improve access to home and community-based services (HCBS). Medicaid requires states to provide care in nursing homes, but HCBS is optional. The MFP program is then critical because it incentivizes investment in HCBS by providing federal funding for transitional services for individuals who wish to leave a nursing home or other institution. Congress has now extended it through 2027.

“This program makes it possible for more people with disabilities to change their lives, on their own terms. And it proves what people with disabilities and their families know – the opportunities for a life in the community, with the services to make it happen, are game changers. We will continue to relentlessly advocate for major investments in home and community-based services,” said Peter Berns, CEO, The Arc.

Other victories in the bill include:

  • Creating a path for a ban on the use of electric shock devices for behavior modification on people with intellectual and developmental disabilities (IDD). The brutal treatment is widely recognized as cruel, harmful, and ineffective. Yet it’s still used at one institution in Massachusetts.
  • Extending the requirement that states apply Medicaid’s spousal impoverishment protections to HCBS through 2027. A spouse shouldn’t have to live in poverty for their partner to receive services in the community.
  • Expanding ABLE account eligibility. ABLE accounts are tax-advantaged savings accounts for individuals with disabilities. This legislation increases the age of disability onset to access an ABLE account from prior to age 26 to age 46, starting in 2026.

Congress’s action or inaction on certain issues creates unfinished business for The Arc and our advocates to rally around in 2023, including:

  • No action to increase to SSI’s asset limits. Right now, people who get SSI can only have $2,000 in assets, and married couples can only have $3,000.
  • Congress is ending important eligibility and funding improvements tied to the COVID-19 public health emergency. This means states may begin to remove ineligible people from their program starting April 1.

“It’s very disappointing that Congress didn’t take the opportunity to help lift people with disabilities out of poverty, by simply bringing the SSI asset limit out of the 1980s into this century. We will continue to push for this change in the New Year,” said Berns.

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Powerful Partnership Leads to Change: Comcast NBCUniversal and The Arc Continue to Make a Difference Through Digital Skills Training

For people with intellectual and developmental disabilities (IDD), digital access and skills are a critical component of gaining independence. In 2022, The Arc and Comcast NBCUniversal once again teamed up to open digital doors for and with people with IDD.

The Arc and Comcast have a long-standing partnership to do this work. The Arc’s national network of nearly 600 chapters provides vital resources and services to individuals with IDD and their families to promote greater independence and opportunity in the community, and through this partnership, since 2017, more than 2,579 clients have received basic digital skills training at 19 sites around the country.

The program continues to expand what’s possible for people with IDD in their professional and personal lives—giving them the tools to chart their own course, just like we all want to do.

Expanding Self-Determination and Independence

Cathy and Ross, The Arc of Greater Indianapolis (Indiana)

Cathy and Ross each live very independent lives in their community, with their chapter supporting their day-to-day activities and routines. Both deeply wanted more time in their respective homes to unwind and safely manage their own needs without staff hovering around them in case they were needed. As chapter staff member Rita Davis noted, “After you’ve been around others all day, as much as you may like them, there are times when you just want to be alone!” However, both of their families were concerned about their safety in the home with no support staff nearby. Each was coached in how to use tools like the Ring Camera and messaging on their phones to monitor their own environments and reassure/check in with family or chapter staff if they needed assistance. Now, Ross is enjoying greater independence and exploring how to self-administer his own medications, and Cathy can decompress by herself home. Their families are thrilled—and relieved—to have a system in place that will keep them safe while supporting them to live more independently and manage their daily lives.

Courtney, The Arc Southern Maryland

Courtney lives with her mother and has been dependent on her for all her scheduling and transportation needs. Unfortunately, her mother was in a car accident which left them without a vehicle. Courtney has many regularly scheduled appointments that she must get to each week. Through her coaching, she was provided with and taught how to use a smartphone that she could use to reach out to others in her network for rides, find and map out public transportation, and schedule and confirm some of her own appointments with her cardiologist, other doctors, and therapists. Her mother has been able to shift some responsibility to Courtney, and an added benefit of her new phone is the ability to stay better connected to friends and family.

India, The Arc Southern Maryland

India lives with her parents and is nonspeaking, so she has historically relied on various vocalizations and pointing to communicate her needs and desires with her caregivers. Her coaching focused on the adoption of new alternative and augmentative communication (AAC) tools to broaden her options for expressing herself. Currently, India is exploring how to use several AAC apps and for the first time ever, she can communicate using words through Touch Chat, which uses a digital word board with photos. This will impact every single aspect of India’s life and give her the tools to advocate for her needs, build relationships, and direct her own life.

Her father John said, “We can better understand her, and we’ll feel more confident she’ll be ok when she’s not with us.”

Professional Development and Furthering Employment Skills

Rochelle, The Arc of Greater Indianapolis (Indiana)

Rochelle’s initial tech coaching sessions focused on completing online employment applications. To her delight, she landed a job at Arby’s consisting of 20 hours a week cleaning the lobby and dining areas. While she was glad to have the job, she was quickly becoming a little bored with it but did not have the computer skills needed to advance in her role. Her coaching sessions continued as staff worked to expand her digital skillset. As a result, after just two months on the job, she was promoted to the drive-through window to take customer orders on the computer. She also uses their computer system to clock in and out, retrieve pay stubs, and complete mandatory trainings. Where Rochelle was initially nervous about using a computer, she now approaches new digital challenges with an improved sense of optimism and confidence and can continue to progress in her career.

Sidney, New Star Services (Illinois)

Sidney wanted to learn how to program his watch to remind him when it was time to go on breaks and lunch and when to clock out for the day and head home, so that he did not have to rely on coworkers or his job coach to remind him. He has learned how to stop, start, and reset timers on his watch and as a result has become far more independent with his time management on the job. Not having to rely on his coworkers or supervisor to keep him on schedule has been a great source of pride for Sidney and has enabled him to turn his attention to learning new employment-based skills.

Bobby, The Arc of Weld County (Colorado)

Bobby has had no access to technology besides his phone. He only recently restarted attending a day program once per week, and his only social interactions were at work. His coaching focused on not only building skills to explore hobbies like music and coding, but also how to expand his network and build relationships he can maintain outside of in-person activities. He learned about internet safety, using various apps, and using Gmail and Zoom. His newfound digital literacy has opened the door for him to take on leadership roles as well. He is now being considered for a board position with The Arc of Weld County, of which virtual access and reviewing materials via email is required. His wife has also received coaching for her needs and goals and is the longest current employee at the agency!

“When we provide access to digital skills training, we create opportunities and pathways to independence that can be life-changing, especially for those living with disabilities,” said Dalila Wilson-Scott, Executive Vice President and Chief Diversity Officer of Comcast Corporation and President of the Comcast NBCUniversal Foundation. “Partnerships like the one we’re proud to share with The Arc – and as a result, the many lives we’re able to help impact – are at the heart of what drives us each and every day at Comcast. We’re so very honored to continue to grow our work together and help enrich even more lives.”

Comcast’s partnership with The Arc is part of Project UP, the company’s comprehensive effort to address digital inequities and help build a future of unlimited possibilities. Backed by a $1 billion commitment to reach 50 million people, Project UP is focused on connecting people to the Internet, advancing economic mobility, and opening doors for the next generation of innovators, entrepreneurs, storytellers, and creators.

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Lack of Medicaid Portability Restricts Life Choices for Zoe and Other Americans With Disabilities

By Zoe in Colorado

I was born with spinal muscular atrophy, a developmental neuromuscular disease that affects every muscle in my body. My entire life, I’ve relied on someone else to do even the most basic care for me. At some point in my childhood, I was placed on a Medicaid waiver in Colorado. It allowed me access to specialized care, like home health, which wasn’t covered by my parents’ primary insurance.

When I was in the third grade, we moved states. I remember my mom spending time on the phone and filling out applications that took almost a year to complete to get me started on the new state’s Medicaid program. When we moved back to Colorado, I watched her do the same thing again, over months, until I was finally placed on a waiver again.

At the time, I didn’t realize what all of that meant. It wasn’t until I was a junior in high school, visiting colleges around the country and being recruited into top-tier honors programs, that I realized I was facing an even bigger barrier than my disability itself. Medicaid, which I now rely on daily, is nontransferable between states. It is not portable. In addition, not all states have the same programs and services to allow an individual to live independently.

Because I need 24-hour assistance that rivals the care level in an assisted living facility, home health care is necessary for me to live independently within my community. I knew that I wanted to go to college, and I knew that I wanted to live in a dorm. But as my acceptance letters began to roll in my senior year of high school, it became apparent that, unlike my peers, my choices were going to be limited—unless, of course, I wanted my mom to move into my dorm and attend classes with me. Though I love her, I knew that was not going to work.

Reluctantly, after research, calls, and dead ends, I turned down prestigious offers, including the rigorous University of California in Los Angeles. I was both ecstatic and heartbroken, knowing I was accepted in a pool of 111,000 applicants at a beautiful school, but knowing the challenges I would face if I relocated to California.

Though it became a different journey, I opted to stay in Colorado, where I am now a fourth-year honors student at the University of Denver. I live on campus independently with a team of caregivers paid through a Medicaid waiver.

Although my story is a happy one for now, the struggle remains the same. While my friends jumped around the country over the summers taking internships in their fields of study, I remained “stuck” in Colorado because I simply can’t pack up my medical equipment and caregivers and hop over to a different state. This reality remains as I look at graduate programs, forcing me to seriously consider online programs since my area of study isn’t offered locally. If I do move, for either school or a career opportunity, the consequences of a gap in Medicaid coverage are too great to risk.

I imagine not having health care coverage for months on end while I try to navigate a new state system on top of moving to a new city and state. My $26,000 medicine? My $56,000 power wheelchair? My monthly allotment of $20,000 to pay caregivers for 24-hour care? POOF! Nothing would be covered. My ventilator rental that I rely on to breathe at night? I’m not trying to be dramatic, but the truth is, I would slowly die without it. Without the drug that is keeping me stable, my body would further deteriorate.

I am privileged to have parents with the financial means to sell their home and transfer their jobs if necessary. But without those natural supports, I would never be able to move. Ever. Because I can’t simply show up and have caregivers and medical providers and Medicaid and a pharmacy and a durable medical equipment company and… and… and…

How to maintain independence is something not every 21-year-old has to think of, but it’s something that I will always have to consider when making life decisions. Until Medicaid offers a portability option, disabled Americans like me will always be restricted in their life choices in ways that our able-bodied peers never will be.