We hear about families facing difficult times or adversity more often than we hear about achievements. Recently, we have received calls about adult services, Turning 22, employment, and transportation. Some examples of situations that we have heard about include:
- My son’s graduating school and he’s on a wait list for adult services. How will I get to work if I have to stay home to watch him?
- I’m stuck in a day setting all day because there isn’t anyone to help me try out new jobs.
- I’m working on regional transportation in my town, because there is no way for my daughter to get around.
We may not even hear from those who face the most significant obstacles, because they may be exhausted from their challenging routine of work and caregiving. Some adversity can be motivating and help us rise to new challenges. But when we need a “safety net” to keep our lives in balance, any change can tip the scales. Adversity then takes away our ability to cope and succeed. A lack of action can be as devastating as a cut in services already received.
One of the main reasons we maintain a high level of advocacy is to level the playing field for our constituents and their families. Others need our advocacy because their lives are at the tipping point, where one more delay or change means giving up. That’s something for those of us who are staff in the field to remember when you get the next phone call from a parent who may seem upset. What they need is a helping hand at that moment.
We have no idea what the coming months will bring. The Arc will be advocating for a state budget that meets needs, while also working with other states to save some core programs funded at the national level. Over 70% of community supports and services are funded through Medicaid, meaning that the federal government underwrites 50% of those costs in Massachusetts.
We need your participation in the weeks ahead. While we advocate, we recognize that some of you may feel close to a tipping point. There is no easy way to deal with such difficulties until circumstances change.
Here are a few ideas that parents have shared with us:
- My reaction to adversity was almost as important as the circumstances I faced
- I reconnected with friends and looked for networks that shared similar values about disability and caregiving
- I didn’t panic. I asked for help from my extended family; that gave me time. It allowed me to regroup. From there, I began to plan a way out and looking for resources.
- My inner resources helped; I continually work on my growth and health. I can’t be there for my child if I ignore myself.