October is National Disability Employment Awareness Month, a time to celebrate the ways that people with disabilities strengthen the workforce, the nation, and the communities in which they live, and to commit to a society in which all people can build bright futures for themselves and their families.
In New York State, the Office for People with Developmental Disabilities (OPWDD) will honor selected businesses in the state that have shown that employing people with developmental disabilities is great for business, and that these workers are valued.
On Thursday, October 22 at the New York State Museum in Albany, OPWDD will host an event called Works for Me, which will highlight the inspiring stories of workers with developmental disabilities who add to the success and productivity of businesses across the state. For more information, visit opwdd.ny.gov.
The post OPWDD with Regina Filannino first appeared on SEONewsWire.net.]]>Our guest this week is Regina Filannino, Executive Director of Advocates for Exceptional Children. Join host Bernard A. Krooks, Esq., and Regina to discuss the Office for Persons with Developmental Disabilities (OPWDD).
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Our guest this week is Regina Filannino, Executive Director of Advocates for Exceptional Children. Join host Bernard A. Krooks, Esq., and Regina to discuss the Office for Persons with Developmental Disabilities (OPWDD).
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Let’s call my son Johnny. He has a neurological impairment and is ambulatory and impressively articulate. These are my views and perceptions as his mother. I hope the points that I will highlight will resonate with readers. I also hope that some of you will be motivated and proactive in not only making a transition plan but making that plan a reality that is sustainable and seek guardianship, before your child reaches the age of majority if appropriate.
My Story
We live in a great school district in Westchester County. My son had had a number of medical interventions and we had a relatively sound understanding of our challenges. Yes, we all know that each child is different and has different needs. My son moved up in grades, followed the Regents track, though he was always in special education classes.
In high school, it all came crashing down and it became apparent to everyone that a Regents diploma was not going to become a reality (for him).
Despite the fact that he had a transition plan and even a transition coordinator set in place in our district, Johnny was no longer interested. As of 11th grade, my son did not want to go to school anymore, thinking it was a huge waste of his time. His CSE agreed that if he didn’t want to attend school there was no way to force him. At that juncture and to my dismay, he was over 18, guardian- less, and therefore emancipated and able legally to make his own decisions about life. Legally, I learned that few options exist for parents to exercise control and supervision over a child after he or she turns 18, whether a child is in school or not. Johnny had not, in the true legal sense of the word, transitioned out of school nor had he transitioned into anything else.
He became more and more out of sync with so many and so much. I watched him, helplessly, as he sat around, slept, played video games, watched TV and frequented CVS to buy candy. This went on for over two years.
I tried many different courses of action: I called adult protective services, the police, the pediatrician, and the neurologist. I cried to friends and family members. I even called Mental Health Association (MHA), who told me in writing that if Johnny wasn’t a threat to himself or to others, they could not do a thing to help me.
What was my problem? My child, a young adult now, was sinking: disengaged, with challenges no meaningful pursuits and no high school degree. My other children, Johnny’s siblings, were progressing. We all felt aggrieved, irritated, frustrated and distressed.
I could find no one, nowhere, no how to help me and Johnny!
There were a number of contributing factors to our rough patch:
1. In as much as he was motivated, he always felt as if he had been pulled down. He was never fully accepting of his own challenges albeit he was extremely knowledgeable of his interventions.
2. I (his mother), had not fully understood that money cannot buy a young adult with a disability services.
3. All of the professionals who had worked with my son had always seen my son as ‘on the fence’; he straddled two worlds; mainstream but not, non-mainstream yet so articulate and able.
Finally, it was made clear to me that the only one who could help my son…was me. I asked myself over and over, “What is appropriate for my son?”
The convergence of these factors made the later years of high school and post-high school a living disaster. I realized that the only way to access county, state and federal services was for him to be in the system and that was a scary thought for me to grasp.
I made one and only one resolution that year: I was going to move my son to a ‘better place’. I didn’t have an idea what exactly that meant nor did I know what that would look like but I committed to knowing for a fact that the status quo absolutely was not working: not for him, me, or the rest of the family.
Since no agency could help, it had to be me. I had the power because Johnny lived in my house with me – otherwise, I realized, I would have had no legal authority over him.
Johnny already had his OPWDD eligibility. I visited Social Security, ACCES VR, and interviewed Medicaid service coordinators (MSC). For the record: if you are NOT happy with your MSC you can and SHOULD change them. There is absolutely no reason for you to stay with someone who is not helping you/ your child.
8 months later… Everything is in place!
Johnny has a new Medicaid service coordinator, who has visited my son numerous times (over the course of just six weeks)! I rented an apartment less than one mile from my house for one year. Johnny is set up there. I buy his groceries; he comes with me, is engaged and helpful. He even washes his sheets – I couldn’t get him to ‘allow’ me to clean his sheets when he lived at home, but now, we are learning how to do laundry and have washed his new sheets. Life is good. Johnny is 1000% more engaged in his life, I am happier, his siblings experience calmness in their home, ACCESS VR is helping Johnny find a job and our MSC is on the case!
What to learn from my experiences:
- You can ask 100 people their opinion regarding your child but only you can change the status quo.
- Don’t be afraid — Change is good!
- We need to organize our kids’ lives so that when we are not around their life can continue and flourish!
If I could impart one piece of advice based on this experience and my knowledge: Sort out a transition plan for your child before he or she reaches the age of majority and seek guardianship, if appropriate. The age of majority is legally 18 in New York; regardless of whether your child has a disability or not.Take these steps before he/she exits high school. Contrary to popular belief, these two moments in time are not necessarily the same as your child may be entitled to exit high school at 21 years of age.
Learn more about our transition planning services by visiting www.specialneedsnewyork.com.
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Our latest guest blogger is Nanette Saturn, Educational Advocate, Westchester Independent Living Center and Putnam Independent Living Services
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.
