This is an excerpt of a letter written by our Special Needs Alliance colleague, Stephen Dale of California. Although the parents being addressed in this letter live in California, the basic message of advocacy and life balance are useful for all.
I have been involved in advocacy at some level for the disabled community my entire adult life. I have been very involved in keeping up with the legislative cuts that are being proposed by the California Legislature and have done my best to try to inform folks about the important events.
THESE ARE TRULY HISTORIC TIMES
Take a moment and remember the time before you had a disabled child. Did you know about IEPs, regional centers, IPPS and so on? Did you have any idea of the complexity of our disability system? Well the point is that most Californians including legislators have no idea about our system and the needs of our disabled loved ones.
I do not remember a time that our social service system wasn’t in deep trouble. Our system has never been properly funded and for many years has been hanging by a thin thread. The current system we have under the Lanterman Act was hard fought by advocates over 40 years ago and is truly in danger of being dismantled. The true effect of these cuts long term is likely to be limits on options for residential programs and basic supports persons with disabilities need to live independently. The consequences seem to many of us unimaginable – but time will tell.
The real fact is that the system is on the verge of a real reverse for services and to a certain degree action now may make a difference. The urgency that you are experiencing from advocates is that what is happening now is going to affect your children in the future in a way that our community has never experienced in the past. The problem is that these cuts are happening so quickly that the advocacy community can’t react fast enough and we are all experiencing rapid fire alerts from all sides.
WHAT CAN YOU DO?
I don’t want to be a fatalist but cuts are coming – like it or not. The question is how many services will be eliminated or cut. If you have the energy – writing letters and attending rallies and so on can help – but it sounds like you are like many parents and getting overwhelmed. Having a disabled child by its nature can be exhausting.
My first advice is don’t feel pressured and don’t feel guilty. Do what you can do within your resources. By having a child with a disability you were drafted into our system and you have a role as an advocate. Sometimes that can be teaching your family, church members, colleagues and so on about the value of our disabled loved ones. Sometimes it is writing letters. Sometimes it is attending meetings and rallies to advocate with decision makers about your family’s needs and hold them accountable. Sometimes it is writing a check. Sometimes it is being a loving parent openly in the community to set a good example that shows the world that persons with disabilities are valuable and worth our love and attention. Even so – know your limits.
Secondly – do what you can do to learn about our system – it’s strengths and its weaknesses. This knowledge in the end is what will make our system stronger. Our system was built by parents like you and it needs some shoring up.
Third – do exactly what you are doing by being part of a support organization. Share your feelings, seek support and share support.
THE LONG VIEW
That being said – one needs to take a longer perspective. Recessions end – and in the long term I think what is important is the long term. When the economy turns around your voice will be needed.
The dismantling of the state hospital system in favor of community programs began during the Kennedy administration with a promise that the resources spent on large institutions would be moved to the community. Unfortunately our community social service system despite its achievements has always been a house of cards. What is important as we lick our wounds and begin to regain lost ground is to build an even stronger system. I believe we need to look at every part of our system, identify it’s deficits, and make our system stronger. For instance – it is my observation that for decades the service providers that provide direct care have been shorted and this created a system that undervalues their contributions. I believe that trying to operate our system on a shoestring budget subjects our most vulnerable citizens to abuse and neglect.
LASTLY PROVIDE WHATEVER SUPPORT YOU CAN WITHIN YOUR RESOURCES
I work with many disability organizations and communicate with their directors and officers. Many organization have experience a drop in funding and membership. In many ways we need to show them our support as they advocate for our needs. It actually doesn’t need to be much. Believe it or not a $20 contribution unsolicited to any of our advocacy organizations goes a long way. Not only does it help to continue the fight – but it gives a much needed message to our warriors that you appreciate what they do advance your loved ones needs. Almost all of the disability organizations fighting these cuts are feeling the same anxiety and burnout you are feeling – and they could all probably use a hug.