December 2024 Advocacy Update

National Caregiver Awareness Month

November was National Family Caregiver Awareness Month and National Home Care and Hospice Month.

Whether full-time or part-time, paid or unpaid, family members or professionals, caregivers offer us and our loved ones independence to live in the community. Please accept our heartfelt thanks to all who have engaged in the work of providing care to others. You are invaluable.

Unpaid family caregivers, paid caregivers, and the individuals receiving care are all inextricably linked. Improving the lives of one group directly affects the rest. The homecare worker crisis continues to be felt across the country – and is unlikely to end any time soon without dramatic changes to the current system.

The vast majority of paid home care workers are women and people of color; almost a third are immigrants; and a quarter are unpaid family caregivers in addition to being home care workers 13. Paid caregivers face significant economic challenges: low wages, underemployment, limited career advancement opportunities, and inconsistent hours 12-13. On average, direct care workers make less than similar occupations, averaging an annual income of $25,015 13, 16. All of this results in high turnover rates and difficulties in recruitment, which has led to unpaid family caregivers taking on even more. 

Unpaid caregiving comes with financial costs as well, from lost jobs, wages, income, and reductions to retirement savings. It’s estimated that the cost of unpaid caregiving amounts to $600 billion a year, which is a 20 percent increase from 2017 8, 10. The number of unpaid caregivers who work in addition to caregiving is also increasing 1. Like home care workers, women make up the majority of all unpaid caregivers and provide more hours of care than men 3, 7, 17. Caregivers of color and caregivers living in rural areas also provide more hours of care than their counterparts, and for those that don’t meet Medicaid asset limits: the less wealth they have, the more hours of care they perform 6, 9, 14.

In fact, Medicaid is one of the most significant sources of support for caregivers. Private insurance and Medicare do not cover LTSS, leaving Medicaid as the main payor of services 15. Additionally, depending on the state, Medicaid can provide respite care, pay family caregivers for their caregiving, and provide access to health insurance and training opportunities to family caregivers and paid care workers, among other things 14. 

Some of the Medicaid related policies that have supported caregivers include:

  • Medicaid Home and Community-Based Services (HCBS) Waivers 14

  • Medicaid spousal impoverishment protection 15

  • Consumer-directed Medicaid programs (such as the MassHealth PCA program) 14

  • Medicaid Access Rule 13

  • The Affordable Care Act 5

Other important policies have been employment and tax related, such as the Family Medical Leave Act (FMLA), paid family leave (in MA, this is the PFML), unemployment insurance for family caregivers who must leave their jobs to perform caregiving duties, and child and dependent care tax credits 15. There is currently a proposed caregiver tax credit bill, H.R. 7165,  in Congress that would allow a family caregiver a tax credit of up to $5,000 a year. Providing care and support to caregivers benefits those receiving care 11. 

There are a number of policy changes that need to be made to improve support for caregivers. Financial and employer support, access to respite care, health care, and social safety net programs, personal support networks (like the peer-mentor and support groups SCIboston offers), all ensure that our greatest resource – family caregivers – can continue to do what they do, without facing negative impacts 4, 15, 17. Investing in a robust direct care workforce will also provide relief to family caregivers. Direct care workers need living wages, reliable and safe employment, access to health insurance and housing, and access to streamlined training and certification programs that are portable between states and job titles, as well as additional career growth opportunities 2, 5, 13, 16. 

This spring there were threats to the MassHealth PCA program that would have changed eligibility requirements and resulted in the removal of thousands of people with disabilities from the program. Their need for assistance wouldn’t have gone away with the changes, and unpaid family caregivers would have had to fill in the gaps in care. That’s not to mention the 4000 PCAs that would have lost their jobs, likely resulting in financial instability. 

We fought back and won; there were no changes to the MassHealth PCA program this year. However, there will continue to be threats to Medicaid programs such as the PCA program, and it will take all of you sharing your stories and getting involved to ensure that caregivers, direct care workers, and people with disabilities get the care they deserve. 

Stay tuned for ways to be involved, and if you’d like to read more about caregivers take a look at the National Academy for State Health Policy’s RAISE Act State Policy Roadmap for Family Caregivers, and PHI’s policy research on the Direct Care Workforce. Check out your state’s LTSS scorecard!

Related: Healey-Driscoll Administration Awarded Nearly Half a Million Dollars to Support Family Caregivers

Input Opportunities:

Review Health Care Professional Trainings:

The Massachusetts Health and Disability Program of the Department of Public Health is looking for feedback on two health care provider trainings: 

  1. Responsive Practice: Providing Health Care and Screening to Individuals with Disabilities

  2. Responsive Practice: Accessible and Adaptive Communication.

These trainings are intended to help “providers reduce barriers and improve access to health care and preventative services. In order to provide feedback, please take either (or both!) training and then submit a feedback form here. 

SURVEYS:

The Government Accountability Office, or GAO, would like to hear about how your disability affects your health care! Please fill out this survey if you are an adult with a disability or a caregiver of an adult with a disability. GAO is an independent agency that works for Congress; any information that you share will be kept confidential, and will not include your name.

The Craig H. Neilsen Foundation would like to better understand the issues with and barriers to effective prescription management for people with spinal cord injuries. No identifiable information will be collected.

The Christopher and Dana Reeve Foundation would like to know which topics and public policy issues are the most important to you! The responses will help to inform which policies they will prioritize in the coming year. This survey will take about 10 minutes to complete.

Wheelchair Repair:

According to recently published research measuring the delays in wheelchair repairs, associated consequences were much more common when repairs were completed by wheelchair vendors. In turn, those who experienced consequences were more likely to develop a secondary healthcare condition such as pressure ulcers. Additionally, when repairs occurred, the average wait time was 14 days. However, 21 percent of the repairs were not fully completed, or had not occurred at all. This research backs up what we already know – delays in wheelchair repairs increases the risk for the wheelchair users and systemic changes need to occur for the safety and wellbeing of wheelchair users. Read the full study here.

Speaking of systemic changes: at the beginning of October, MassHealth adopted emergent regulations around durable medical equipment repair (such as wheelchairs). These changes include an add-on payment of $1000 for every repair completed within 12 calendar days with 80 percent of that additional payment being reinvested into improving the rate of repairs, coverage of preventative maintenance that requires a trained technician to complete, and extensive reporting requirements. Read more here.

Transportation:

Local:The MBTA has launched a new mobile app called “MBTA Go”  that provides accurate real-time updates for all fixed route services and estimated arrival times for a rider’s trip. Eventually the app will also provide real-time updates about elevator outages as well as other accessibility related updates. The app is currently only available for iOS users, but the Android version should launch sometime in February 2025.  Both versions of the app will be fully accessible by Voice Control and Voice Access.

Related: Healey Driscoll Administration Announces Fare Free Regional Transit Across State, Mass.gov

National:  The U.S. Department of Transportation has fined American Airlines $50 million for unsafe physical assistance of passengers with disabilities and the mishandling of wheelchairs resulting in damage. This fine is 25 times larger than the next largest airline penalty addressing violations of disability protections. According to the U.S. DOT, they have active investigations ongoing into other airline companies. 

This has created an opportunity for advocates to share their experiences with air travel. For example, the United Spinal Association is looking for advocates with stories that involve airlines other than American Airlines. Have a story? Please contact Annie Streit at astreit@unitedspinal.org to share it!

Additionally, if you have experienced treatment by an airline that violates the Air Carrier Access Act, please file a complaint with the Department of Transportation’s Aviation Consumer Protection Division. The U.S. DOT needs these complaints in order to investigate violations, enforce the regulations, and hold airlines accountable. If you’re unsure of your rights while flying, read the Airline Passengers with Disabilities Bill of Rights. 

United Spinal also has a resource page on how to make your transportation complaint count. This page includes instructions on how to file a complaint for all types of transportation, including air travel, buses, light rail, paratransit, and taxis. 

Related: Delta Air Lines, DOT Update Plans for Adaptive Wheelchair Seats on Future Flights, USA Today

Travel:

Traveling with a wheelchair can pose some unique challenges. This is why Permobil has put together some checklists and guides on how to safely travel with your wheelchair. They also offer a downloadable travel tag for your chair. The United Spinal Association Care Support Work Group has provided resources for creating a care support plan while traveling. 

Related: Five Pro Tips for Flying with a Power Wheelchair, New Mobility

Housing:

Looking for accessible, affordable housing? The Metrolist is a list of units currently available to rent or for sale in the Greater Boston area. You can search by location, accessibility, number of bedrooms, amenities, income eligibility, and application type. The Massachusetts Housing Navigator is a list of affordable rental housing across the state. You can search by location, accessibility, number of bedrooms, amenities, age eligibility, availability, and affordability.

PCA/Caregivers:

The Kessler Foundation has developed a free course to train PCA’s on caring for people with spinal cord injuries, in partnership with rehab centers, disability organizations, and community members. The course contains lessons on the basics of physical functions affected by SCI, personal and social challenges created by SCI, common misunderstandings about SCI, and complications of SCI. Most of the material is offered in a video format. The course takes approximately two hours to complete, but does not need to be completed all at once. Click here to enroll.

Events*:

*(all events are free unless otherwise noted)

NIH Town Hall on Strategic Plan for Disability Research:

Tuesday, December 3rd, 2024 from 2:30 - 3:30 pm, on Zoom.

Please register here.

The National Institutes of Health (NIH) is developing an agency-wide plan for disability research and is looking for community involvement from people with disabilities, researchers, clinicians, and advocacy organizations. This plan “will identify scientific themes”, goals and objectives that advances research for the betterment of people with disabilities. This town hall will be held virtually and will include a presentation, discussion, and summary of the input and feedback already received, as well as a Q&A with the audience. ASL and CART will be provided. 

U.S. Access Board Webinar: Accessible Bus & Van Transportation:

Thursday, December 5th, 2024 from 2:30 - 4:00 pm, on Zoom.

Please register here.

Please join the U.S. Access Board for a webinar on ADA compliance requirements for bus and van transportation and accessible transportation facilities, as well as the public right-of-way accessibility guidelines (PROWAG) of transit stops and transit shelters. Sign language interpretation and real-time captioning will be available for this session. 

Semi-Annual MBTA Accessibility Settlement update:

Wednesday, December 11th, 2024 from 5:30 - 7:30 pm, on Zoom.

Please register here.

If you use any MBTA transit services, this twice-yearly meeting will keep you informed of how the MBTA is improving accessibility in compliance with the settlement of Daniels-Finegold v. the MBTA, a landmark lawsuit that resulted in creation of the Department of System-Wide Accessibility (SWA) in 2007. Showing your interest adds strength to SWA’s power to upgrade stations, stops, and vehicles! Spanish, live captioning, and American Sign Language will be provided for this meeting. Other accommodations available upon request.

U.S. Access Board Presents Preliminary Findings on AI:

Thursday, December 12th, 2024 from 2:00 - 3:30 pm, on Zoom.

Join the virtual meeting here. 

Meeting ID: 160 173 1944

Passcode: 524293

The U.S. Access Board will present their preliminary findings on the risks and benefits of Artificial Intelligence (AI) on the disability community as part of the Developing Artificial Intelligence (AI) Equity, Access and Inclusion for All Series.The findings are based on the AI hearings held this summer, independent research, and comments received by the public. You can find more information and recordings of the previous sessions here. 

United Spinal Association’s Advocacy LIVE:

Tuesday, December 17th, 2024 from 1:00-2:00 pm, on Zoom.

Please register here to attend.

Interested in grassroots advocacy? The United Spinal Association holds a monthly meeting for advocates to collaborate with advocates from across the United States on Federal, state, and local issues affecting the disability community. Top priorities include wheelchair repair, air travel, SSI asset limits, parking, emergency preparedness, care support, and housing. Advocacy LIVE meetings are held monthly on the third Tuesday, alternating each month from 1-2 PM and 5-6 PM. 

Interested in specific issues? Join one of United Spinal’s working groups! Groups include: outdoor access, accessible parking, accessible transportation, emergency preparedness, and care support. Complete this form to join any of the groups.

Free at-home COVID-19 Tests:

The U.S. Department of Health and Human Services Administration for Strategic Preparedness and Response and the United States Postal Service has begun a new program offering free COVID-19 tests. Each order will include four tests that will detect the current COVID-19 variants.

One of the available test options is the Orasure InteliSwab test, which is more accessible for people with low manual dexterity. For more information on the features that make the InteliSwab test more accessible, please visit, ACL.gov/AccessibleTests. Order accessible tests here. Order standard tests here. 

From United Spinal Association:

Take Action: Support Home and Community Based Care Workers. Reform wheelchair service and repair. Create a pilot program that would help the length of rehabilitation stays. Ask CMS to change the “in the home” language. End segregated subminimum wage!

Policy Survey: Bring your most important issues to United Spinal—they’re here to help. Let them know how they can focus on what’s important to you by taking this brief policy survey.

Advocacy 101: Interested in expanding your advocacy knowledge? Head over to United Spinal Association’s website to take their first module: Why Advocacy?. You’ll learn a history of disability related advocacy, important definitions, and ways to be a more successful advocate. Click here to take the course. It will take 45 minutes or less to complete. 

Emergency Preparedness: What Can Wheelchair Users Do in An Emergency Evacuation?

Health Equity: United Spinal has compiled a list of resources to help you receive the healthcare you deserve!

From the Christopher and Dana Reeve Foundation:

Self-Advocacy Series: This is a seven-part video series on disability rights and self-advocacy. Explore disability history and learn about Section 504 and the Americans with Disabilities Act (ADA), and pick up tips on navigating healthcare, employment, housing, transportation, and education. Watch the series here. 

Advocate with the Reeve Foundation! Sign up here!

Boston:

Did you know? Boston has a number of restrooms open to the public. Sometimes they can be difficult to find. Click here for a map of all of the public restrooms available in the city.

The Boston Disability Commission offers a number of programs, including how to apply for an accessible parking spot, requests for a curb ramp installation or repair, and additional information on housing, transportation and employment. Check out their Youtube for webinars on a variety of topics. The most recent was on finding affordable, accessible housing in Boston.

How to Navigate Insurance after Life-Changing Injury & Illness:

Spaulding hosts a yearly webinar to provide information and education.This year’s webinar covered the insurance maze. Learn the difference between commercial, Federal (i.e. Medicare), State (i.e. Medicaid), and long-term plans, as well as tips and tricks to get the most out of your insurance purchase. This webinar information is not specific to Massachusetts. Watch the recording, as well as last year’s recording on community organizations, here. 

Federal Bills on Our Radar:

The SSI Savings Penalty Elimination Act:

H.R. 5408/S.2767: SSI asset limits have not changed since 1989, leaving many struggling to make ends meet. This bill would raise the asset limit from $2,000 for an individual and $3,000 for a couple, to $10,000 and $20,000 respectively. The asset limit would also annually adjust for inflation. It is currently in the House committee on Ways and Means and the Senate committee on Finance. You can contact your legislators through congress.gov to let them know what you think of this bill. The House and Senate links are here. If you are in favor of this bill, United Spinal has a pre-written email that you can sign your name to and send to your legislator.

The Choices for Increased Mobility Act:

This bill, H.R. 5371, would allow Medicare beneficiaries to obtain access to titanium and carbon fiber wheelchair frames, by allowing them to upgrade their wheelchairs at their own cost. Currently, Medicare beneficiaries are not allowed to upgrade their wheelchairs to a titanium frame, and many commercial plans (which often mirror these coverage policies) have followed suit. Titanium and Carbon fiber frames offer a freedom of mobility and reduction of secondary health concerns that other frames do not, due to being extremely lightweight. This bill has been reported favorably by the federal House Energy and Commerce committee and is being reviewed by the House Ways and Means. Feedback is also being accepted on this bill at congress.gov. Click here. 

The VITAL Act:

H.R.8380, or the Visitable Inclusive Tax Credits for Accessible Living (VITAL) Act aims to increase the number of affordable accessible housing units in the nation. It would increase funding for the Low-Income Housing Tax Credit (LIHTC) program, increase funding for developers who build units that are accessible to people with disabilities and in locations that are connected with their community, and require that at least 40 percent of the units constructed under LIHTC are adaptable/accessible for people with disabilities. Read the fact sheet here. 

The Disability Voting Rights Act:

H.R. 10149 was introduced by U.S. Representative Mary Gay Scanlon of Pennsylvania this November. It would amend the Help America Vote Act of 2002, by requiring states to increase access to voter registration, absentee voting, and voting by mail. It would also require each state to have an office dedicated to providing voting information to people with disabilities. Read more here.