When I was young, I remember my parents saying that “ignorance is bliss”. I never liked that expression and it has become more relevant for me when I speak with parents who have children affected by Duchenne muscular dystrophy who are trying to navigate educational or health care systems. Parents are often overwhelmed by the complexity of these programs and their unfamiliarity with the process. Not knowing how the system works, where to get help and what to ask for can be a major source of stress for families.
It isn’t too difficult to imagine the reality of missing out when considering the webs that make up state health insurance programs. Each state has different programs and eligibility is often hard to decipher. Some programs reimburse families for premiums they pay towards private insurance for covered individuals. If you don’t know about the program you can’t participate. There are a variety of waiver programs that cover individuals with specific conditions or who meet a certain level of disability. Not knowing the qualifying standards makes it difficult to know when to apply for coverage.
There are instances where not knowing something can cause other problems for families. The American Association of Retired Persons (AARP) Public Policy Institute recently released a report and fact sheet concerning the issue of Protecting Family Caregivers from Employment Discrimination. The lengthy report is focused on the fact that more families care for elderly parents and disabled family members and potential problems this may cause with their employers. While parents working in businesses with 50 or more employees are provided limited unpaid time off to care for sick children by the Family Medical Leave Act (FMLA), there are few laws protecting workers who care for elderly parents, children or disabled family members from unfair treatment by employers. This unfair treatment is called Family Responsibilities Discrimination. The report makes a clear case for reforms to laws that would provide protection from discrimination to families caring for others. This issue is of great importance to families caring for someone affected by Duchenne muscular dystrophy. I urge parents to take time and read the report and fact sheet to become better informed.
I appreciate the publication of the AARP Public Policy Report (PDF) and Fact Sheet (PDF) as it clearly explains the issue and offers near term suggestions to ensure protection of employees as well as longer tem remedies to end discrimination. I’m sure Parent Project Muscular Dystrophy will keep this issue in its sights and support appropriate efforts to protect families as they develop.
Paraphrasing a line from the Lion King movie, we often don’t know what we don’t know. Once we learn about issues that affect ourselves and our families we are better able to help and protect each other. Fortunately we are in a time where information sharing has become easier and we can forget the concept that “ignorance is bliss” once and for all.
Brian Denger, Collaborative Programs Administrator
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