Advocacy Update: Progress, Challenges, and a Call to Action
Since I last wrote to all of you, the political advocacy season has begun and we are now heading toward its closing days. The state budget, which has gone through three separate versions from the Governor, the House of Representatives, and the Senate, is now in Conference Committee and will hopefully go to the Governor for her signature within the next three weeks.
The budget at the state level is generally favorable for our nonprofit human services environment. Key aspects of the budget, including $168 million for the biannual review of Residential Services rates and an additional $85 million from previous years’ savings, will greatly assist Lifeworks and other agencies in increasing salaries and strengthening supports for our programs. This average increase of 8.92% in residential rates is based on 53% of the Bureau of Labor Statistics data regarding what professional staff in this field are paid. Our industry goal is 75% so that our staff can adequately support themselves and their families.
Other programs, such as Independent Living Supports and Shared Living, will receive similar increases. However, it is important to understand that these rate increases, while they may seem generous, occur only once every two years. As an agency, we must utilize these funds to manage service costs and staff cost-of-living increases over the next two years.
The state budget does present some challenges, including proposed cuts to Adult Family Care programs ranging from $35 million to $70 million. This service is utilized by families of individuals with intellectual and developmental disabilities to support their loved ones at home, as well as by many families caring for elderly relatives. Programs supported by MassHealth, such as Day Habilitation, Harbor Counseling Services, and others, were level-funded for the year, which significantly hampers our ability to maintain services that have experienced major cost increases. The rate increases also do not fully cover expenses such as the 14.5% increase in staff health insurance costs, along with rising utility and fuel expenses across our programs.
Perhaps the greatest challenge facing our families has been the uncertainty, confusion, and overwhelming amount of paperwork they are receiving as a result of the federal government’s efforts to achieve reductions and savings within the Medicaid program (known as MassHealth in Massachusetts). These efforts have resulted in a significant increase in audits, revalidations, reverifications of eligibility, and confirmations of disability status, often occurring three to five times more frequently than in past years.
Families and individuals we serve are receiving large paper packets, often arriving in what could be called the “Bad Blue Envelope.” These packets frequently require 15 to 20 pages of documentation. They ask people to reverify a developmental disability for someone who may be 50 years old, require proof regarding bank accounts from institutions that have been closed for more than a decade, and often arrive 10 to 15 days after they were mailed. As a result, families may have only two weeks to gather extensive documentation before facing suspension of services.
All of this is due to the poorly named “Big Beautiful Bill.” Lifeworks, our staff, and our Board have been involved in advocacy and education related to the Massachusetts budget process for more than 50 years. While the process is not always easy, it is one we understand well. We have maintained strong relationships with our local legislators and, as demonstrated by the more than 110 people who attended our recent Legislative Breakfast, people look to Lifeworks for leadership and guidance.
Today, however, program cuts, administrative confusion, and delays are creating enormous burdens for people with disabilities, their families and guardians, our staff, and senior citizens throughout our communities who have limited supports. In addition, many families are fearful because of other actions and messaging coming from the federal government. Some do not open their mail or respond to requests. Too often, they wait until the 30-day response period has expired, resulting in service suspensions. At that point, reinstating services becomes even more difficult than responding in the first place.
In my 42 years at Lifeworks, we have weathered many budget battles and financial challenges, including Proposition 2½, income tax cuts, and economic downturns such as those in 1987 and 2007. However, for the first time in my career, we are seeing actions at the federal level that have caused state services and local programs like ours to question the stability of essential supports. Programs such as Medicaid, SNAP, and housing subsidies have long been critical resources for people with disabilities. In addition, uncertainty and difficulties surrounding access to Social Security and Medicare have created even greater concern for many individuals and families.
So, my blog this month is simple: it is a Call to Action.
Please pay close attention to the supports that you or your family member receive. Please open your mail. Please stay in contact with our staff if they reach out to you. Please follow the Calls to Action issued by The Arc of the United States and The Arc of Massachusetts, and join us in reaching out to our representatives on Capitol Hill and Beacon Hill.
The uncertainty in Washington is beginning to affect many people in our service community. If you receive information or a notice regarding the cancellation of services and do not understand it, please reach out to Lifeworks. Our staff will do all they can to support you or connect you with community resources that can help.
Thank you for your continued support and contributions. As we continue our Spring Annual Campaign, the need for our services, advocacy, and support has never been greater. We are inspired every day by our agency’s history and by the leaders who came before us and taught us how to advocate. We will continue to carry that legacy forward.
Sincerely,
Dan Burke
