Clearly, parents of a child with a developmental disability experience stress far beyond what most parents of neuro-typical children experience. In fact, a recent study noted that mothers of children with autism experience as much stress as combat veterans.
I didn’t need to see the data to believe this. I am the mother of a 9 year-old neuro-typical daughter, and a 13 year- old son who is diagnosed on the Autism Spectrum, along with ADHD and anxiety. When my daughter started getting older, I noticed how easy it was to do things with her, compared to my son. This is when I began to realize how different and challenging my life was compared to the average mother.
Since many children with developmental disabilities require a tremendous amount of one-on-one support, it’s difficult to take them on basic errands or to places where a child may have to sit for a period of time. Many parents take for granted the fact that they can bring their typical children to appointments or make a quick run to the store or send their child into the yard to play so they can get things done in their home. Parents of children with disabilities cannot often do this. The most basic of tasks — the supermarket, the pharmacy, a haircut, or a visit to a friends’ home — can be stressful, frustrating or simply avoided.
Respite Care Can Help You Be a Better Parent
Too often, parents are homebound and lose patience and time with their other children and relationships with family and friends suffer. I did not want to feel that I had to escape. I wanted to be a better mom, a healthier mom, a happier mom. I wanted to feel rested in order to enjoy the times I would be taking both of my children on an outing and to have some time to myself as well, to build and maintain my own relationships. I required time during the week or weekends to engage in activities without the stress automatically attached to each venture. I needed someone to engage my son and keep him properly occupied so I could have some time for whatever I needed to do.
Help is Available!
The good news is help is available for parents in this situation. If you are married or a single parent, respite care can help you maintain or build a relationship. It also benefits the siblings and allows them to access your time and attention. It allows for down time to re-group and re-energize yourself. Many parents feel that our needs are not as important as our children’s needs. They are! The stress, anxiety, frustration, anger and solitude aren’t healthy and do not help make you a stronger parent.
The goal of respite care is to provide relief to parents so they can find free time to take care of needed tasks or simply to maintain balance. The Office of People with Developmental Disabilities (OPWDD) Home and Community Based Medicaid Waiver may be an option to assist you in accessing this service through Medicaid, despite parental income level. There are limitations to the hours you are approved for, but even a few hours a week can make a significant difference in your family’s quality of life.
Don’t Give Up
I had always known respite care was available but had a difficult time finding a provider and, quite frankly, the thought of looking for someone on my own was daunting. I am so happy that I didn’t give up because since hiring my respite worker almost a year ago, I have never looked back. In fact, it has prompted me to make additional changes in my life that have benefited not only myself, but more importantly my children. I’m able to run out of the house at the last minute for something at the market, give my daughter some well-deserved attention, enjoy a bath or work on my personal relationships. My respite worker helps with homework and interacts with my son by playing games or doing some outdoor activities. This time not only allows me to have some freedom but provides the necessary one-on-one interaction my son requires. It also provides him with healthy alternatives to play. He’s no longer sitting in front of video games or movies, which in all fairness, may be the only respite I was getting. I challenge anyone to try to perform the daily tasks parents have to accomplish while simultaneously providing the constant attention required for their child. It’s impossible!
I cannot imagine how I was able to do it for so many years without this help. It’s important for every parent to know about the Medicaid waiver and the many services it provides. The initial set up or application process may seem daunting but the reward is tremendous.
Contact OPWDD Office
There are eligibility requirements through the Office of People with Developmental Disabilities (OPWDD). You must contact your local OPWDD office and explain that you have a child with a developmental disability and would like to apply for eligibility for OPWDD services. You can get information at http://www.opwdd.ny.gov/
Once your child is found eligible for OPWDD, you will be directed to attend a Front Door Session for individuals and families of people with Developmental Disabilities. Here, you will learn about the different services OPWDD offers and how you can obtain respite services through the Medicaid waiver or through the many different Family Support programs offered throughout New York State.
Nanette Saturn is an educational advocate with Putnam Independent Living Services, a satellite office of Westchester Independent Living Center. She is a mother of two children, one of whom has autism.