This legislative session is a high priority for people with disabilities. I say this a lot, but that’s because politics and law require repeating messages over and over, and making efforts over and over. It’s the legislature that can resolve the critical shortage of the PCA program; it’s the legislature that can get positive results for medical assistance reform; it’s the legislature where we can get a more person-centered Homecare Bill of Rights.

There’s a lot of discussion among legislators and the public about requiring individuals on medical assistance to work or volunteer a specific number of hours to be eligible. They are trying to get “freeloaders” off the taxpayer’s dime. I’m not sure what is the fair way to do that without affecting people in real medical need. There are several questions to be asked on the issue, as I see it; first, why wouldn’t an individual already work to get their medical needs met? I’m sure that many people would work if they could. If an individual can work, they can use one of the state’s programs like Medical Assistance for Employed Persons with Disabilities (MA-EPD) to work without losing some vital and needed benefits. Many people work on MA-EPD, have been working for many years and want to continue working. So what about people who want to work but can’t find a job or a job that uses their skills and is truly integrated into the mainstream workforce? Finally, requiring people in the disability community to work without providing sufficient support creates a Catch-22. If we don’t have qualified, responsible and reliable PCAs with the needed soft skills to get us to work (and in some cases remain at work with us), we can’t be reliably and consistently employed.

On that note, I would like to ask each of you, when you’re talking to your legislator, to ask them to support House File 0481 and Senate File 0393. These bills will provide for persons who need what’s considered complex personal care, or 10 hours or more of PCA services a day, to qualify for a complex-care reimbursement rate. A PCA eligible for complex-care wages will be one who has successfully completed training and competency testing requirements. They would receive 72 percent of a 20 percent raise (agencies are required to pay the direct service provider 72 percent of their state reimbursement). Next session, we will be fighting for a 20 percent raise across the board for all home care workers.

There are several additional bills being heard on medical assistance reform, and they address parts of the Home Care Bill of Rights. HF 4018, SF 3437 make changes in how much advance notice a client should be given before an agency’s termination of service. The purpose of any Bill of Rights is to protect those rights against infringement from public officials and private organizations. The current law reads, “the [client has the] right to at least 10 days advance notice of termination.” In House file 4018, there is a change from 10 days to 30 days notice,  and that will help, since 10 days is just not enough to find a new agency; have any PCAs that follow the client get a background check and complete provider service agreements; and recruit and train new PCAs. With the shortage of home care workers, it is nearly impossible to get it all together even in 30 days. The current bill also requires agencies to provide an explanation about why they are being terminated—whether it’s “an unsafe working environment or the client engages in conduct that significantly alters the service plan; or a person who lives with the client, or others create an abusive or unsafe work environment for the person providing home care services, and the right [from the provider] to a coordinated transfer when there will be a change in provider services.” I wonder who should be determining what constitutes an unsafe work environment. I think the wording is too subjective and needs an outside entity to determine what establishes a hazardous work environment. It seems like the Bill of Rights might be protecting the agencies rather than the clients. Many PCAs end up following the client rather than staying with an agency that is just looking for a way out of providing services to blameless clients with a high level of medical need. They place extra, costly demands on agency staffing.

On the front page, we have a message from a long-time friend, Luther Granquist, formerly of the Minnesota Disability Law Center and Access Press. Luther writes about the value and importance of having a newspaper dedicated to providing a voice for people with disabilities. Luther and many others recall Access Press founder Charlie Smith saying, “Information is power.” When we have the right information and knowledge, we can think for ourselves and make independent judgments rather than having other people tell us what we need. That is the goal of the disability rights movement: to have the resources and knowledge to speak for ourselves, tell our own stories and explain the impact of policy decisions and how they affect us. Please help support Access Press through donations and keep using our advertisers’ products.

Have a great month and we’ll talk in May. Hopefully, it will be warm and sunny—or at least not snowing.