Children with disabilities who are approaching adulthood are nearing a threshold that may provoke anxiety for parents, but resources are available to help.
Children with disabilities are entitled to receive services until they reach the age of 21, due to provisions of the Individuals with Disabilities Education Act. However, upon reaching adulthood, many such services are no longer available. Parents are faced with two important decisions: where the young person will live, and what he or she will do. Seniors with disabilities often face similar issues.
If an adult with special needs plans to live independently, then it is important to begin researching the options well ahead of time. There are often long waiting lists for group homes for developmentally disabled adults, and many families have ended up moving their own home to be closer to better independent living opportunities for their loved one.
Depending on individual circumstances, young adults with disabilities may be looking forward to college or entering the work force, or parents may be looking for opportunities for organized activities for adults with disabilities. In any case, it is important to prepare far in advance and seek out help wherever it is available.
In New York State, an excellent resource for many of these issues is the state Developmental Disabilities Regional Offices, which can assist with programs, services and supports for adults of all ages with special needs, including elderly individuals with developmental disabilities. The offices are the starting point to apply for services. Visit www.opwdd.ny.gov for more information.
With proper care and support, adults and seniors with disabilities can take advantage of life’s opportunities.
Flying may become easier for people with disabilities, thanks to new federal rules.
The U.S. Department of Transportation has issued new rules that will require airlines to make their automated airport kiosks and their websites accessible to people with disabilities. In addition, airlines will be able to choose between two options for handling wheelchairs on flights. They may stow them in the cabin compartment or strap them to a seat row, which will ensure that two wheelchairs of the manual, folding type can be transported at once.
The rules are part of the DOT’s ongoing implementation of the Air Carrier Access Act of 1986. Officials said that the rules built upon past work to ensure air access for people with disabilities, and that air travelers should be treated with fairness regardless of any disabilities.
The rules require airlines to make pages of their websites that contain core information and services accessible to people with disabilities within two years, and to make all web pages accessible within three years. The accessibility standards are contained in the Website Content Accessibility Guidelines and address such issues as navigability by people with vision limitations. The rule also applies to foreign airlines that have websites marketed toward U.S. travel consumers.
Also under the new rules, web-based discount fares will have to be disclosed and offered to customers who are unable to use airlines’ websites due to a disability. This requirement takes effect 180 days after the effective date of the rule.
The rule regarding automated airport kiosks, such as those for printing baggage tags and boarding passes, requires that any new kiosks installed be accessible to people with disabilities, until 25 percent or more of the kiosks in each airport are accessible. The 25 percent goal must be reached within 10 years regardless of whether new kiosks are installed.
The rule regarding stowage of wheelchairs permits airlines more flexibility. Previously, the seat-strapping method of stowing wheelchairs was restricted, and the method of stowing the wheelchair in a closet or other compartment was favored. Now both methods may be used under certain conditions, allowing an aircraft to stow two wheelchairs if necessary.
As the holiday season approaches, our firm thanks those who have trusted us with their children and their education.
For most of our families, the need to learn and to do well in school is as essential as the need to eat and breathe. When a child is struggling in school and unable to learn or attend, as parents, our worlds fall apart. All parents, no matter what their background, want simply for their children to have a better life than they have. The greatest gift any parent can ask for is a healthy, engaged child who is able to attend school and make progress. While this sounds simple, in some cases, it can be extremely complex. In some cases, years of litigation and heartache can result from the wrong placement for a child who just cannot access the public school environment. These situations often seem hopeless, but with patience and tireless advocacy, we have helped parents and students find their way. Remember though, as Dr. Temple Grandin noted, often, in helping children with their struggles, “there is no single magic bullet.”
But fortunately, in some cases, there is a magic bullet. For some of our students, a new school placement has made all the difference. We have represented, among others, children who were bullied and threatened suicide in school but who are now engaged; children for whom school made them physically ill but who are now healthy in a new placement, and children who were having violent meltdowns frequently but who are now receiving support in residential settings. For each of these cases, we worked on a solution and in the best situations, worked with the school districts so that all understood the student’s needs a bit better.
An appropriate placement can change a life. Conversely, in a few cases, the wrong school can be life threatening. Struggling parents and students must not give up. The legal process can be difficult and onerous, but children with disabilities in the United States have the right to a free and appropriate public education and the school must work for the child.
At the holidays approach, take the time to appreciate the greatest gift—children who are healthy and able to attend school and to learn. Do not take normalcy for granted. As for those in your life who are struggling, take the time and effort to truly understand them and make every effort to make sure your school district understands your child also. Never give up and continue to cherish your children.
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.
This article does not constitute legal advice and should not be relied upon. If you need legal advice concerning this or any other topic please contact our offices to schedule a consultation with one of our attorneys at 914-684-2100 or 212-490-2020.
Our latest guest blogger is Nanette Saturn, Educational Advocate, 
