The United States House of Representatives, by a vote of 217 to 213, on May 4, 2017, approved legislation—called the American Health Care Act–to repeal aspects of the Affordable Care Act and replace them. The House bill must still pass the Senate to become law. If approved, the new legislation will impact every American citizen, particularly those who have not had insurance before, those who have pre-existing conditions and those who rely on Medicaid. According to The New York Times, the House bill would eliminate tax penalties for people who go without health insurance. The bill would roll back state-by-state expansions of Medicaid, which covers millions of low-income Americans. The Congressional Budget Office estimated that the bill would cut Medicaid spending by $880 billion. School districts will face cuts in funding and children with disabilities could receive less services.
We will keep you apprised on important developments and the changes in law will have a significant impact on vulnerable adults and children with disabilities.
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.
Adults with disabilities are increasingly at risk as the U.S. considers cuts to public funding. While the debate rages on concerning how the U.S. will continue to fund Medicaid and Social Security benefits, where cuts should be made and whether the systems are at all sustainable, millions of people with disabilities rely on the programs for a significant portion of their basic needs.
According to the Henry J. Kaiser Family Foundation, as of 2009, more than 5.5 million adults with disabilities living in the U.S. have their health care covered under Medicaid. Approximately 6.9 million individuals with disabilities get regular Social Security payments via the Supplemental Security Income program.
In addition to navigating the complex systems of medical care and education for persons with disabilities, family members often are faced with the issue of how to ensure adequate financial assets to pay for these expenses without disqualifying the person with disabilities from government benefits. Families often begin a special needs trust, which can have money placed into it on a regular basis for future needs, like a college savings plan. Others have the trust designed so that any proceeds from specific life insurance policies will be directed to the trust when they pass.
Many estate planning attorneys who specialize in special needs trusts suggest judicious planning. Rather than piece together a plan that may have significant holes, work with an experienced special needs trust attorney to help with financial planning. The family members of someone with a disability should ensure their own financial needs are also secure; if parents use all of their funds and go bankrupt, an entire family can be devastated. View the special needs trust attorney as an informational resource about other support systems; there may be outreach programs and other benefits available though Medicaid, such as art classes and drop-in programs. Work with other family members in developing a plan for trust administrators so they stay informed about plans for the special needs individual and the proper role of the administrator.
The U.S. Supreme Court case Florida v. Department of Health and Human Services, which challenged the constitutionality of the Patient Protection and Affordable Care Act has been covered heavily by mainstream and online media outlets. The Court heard arguments on the case in a historical three day session March 26-28, 2012.
The U.S. Supreme Court has upheld the individual mandate and most provisions of the Affordable Care Act. A federal penalty on states not cooperating with the Medicaid expansion provision of the law was deemed unconstitutional but Chief Justice John Roberts gave Congress a constitutional antidote with his opinion.
While most news outlets have focused on the political outcome of the Court’s decision, they have failed to cover the important issue of how the ruling will affect the lives of those with special needs. Had the Court overturned the law in its entirety, people caring for loved ones with special needs would have lost access to many benefits provided by the Affordable Care Act.
Prior to the Affordable Care Act, employer plans and individual health insurance policies could exclude children 19 and under with special needs as they were often determined to be “pre-existing conditions.”
Special needs children and adults will require more medical attention in their lifetime than other individuals. The law now prohibits insurance companies from setting a maximum lifetime benefit which means special needs patients cannot lose their health coverage because of too many claims or because they have exceeded a policy limit.
Our guest blogger this week is Denise Horsford, NYC Parent Coordinator and Special Needs Parent.
Have you ever thought that having a special needs child is difficult? You know what, you are absolutely correct. I have found a few things that help me relax and it doesn’t cost very much.
There are small, inexpensive things that you can do to make your life a little easier, happier and healthier.
Start simple:
Ask for help
Be kind and patient with yourself
Take a hour walk in the park
Go to the beauty parlor
A hot bubble bath
A night out with the girls to the movies
A date night with your significant other
Manicure and a pedicure
Facial or Massage
Parent support groups
Yoga or exercise class at the local YWCA
You will be surprised how great you can feel with implementing a few “me moments” into your life. You can swap turns in going out with family members. Agree to do a service or task for them if they will watch your child for an hour or two.
You must remember first and foremost, that if you do not take care of yourself, it is nearly impossible for to take care of anyone else. Your child needs a healthy and happy parent to help support them. There are many organizations that offer services to help you find after school and recreational programs for your child. The service is “Medicaid Service Coordination” and there is no charge to you for their services. They are paid directly through Medicaid. Take advantage of the help that is available to you, there is no need to do it all alone. You can find a listing of Medicaid Services Coordination organizations on the NYS OPWDD website.
Don’t be afraid to let go, your child will just fine with someone other than you for few hours.
Listed below are definitions of the services that are offered through Medicaid Service Coordination:
“Respite Services”
“Respite services provide temporary relief from the demands of care giving, which helps reduce overall family stress. This often enables families to better meet the needs of their loved one with a developmental disability. Respite can be provided in the home or out of the home, during the day, evenings or overnight. Respite is an “indirect” service that provides relief to individuals who are responsible for the primary care and support of an individual with a developmental disability. When a family member, Family Care provider, or live-in/house-parent staff person has to deal with such things as illness, emergency, and care giver or staff Vacation, respite services can ensure that the individual’s needs are met.”
Parents of children with developmental disabilities are eligible to receive Medicaid Service Coordination “(MSC”) and (“Respite”).
“Medicaid Service Coordination” assists persons with developmental disabilities and their families in gaining access to services and supports appropriate to their needs. OPWDD delivers almost all service coordination through its Medicaid Service Coordination program. MSC is provided by qualified service coordinators and uses a person-centered planning process in developing, implementing, and maintaining an Individualized Service Plan.”
(If you would like to receive a list of Medicaid Service Coordination agencies, please contact the Parent Coordinator).
New York State Institute on Disability, (“NYSID”) offers the following services for families with developmental disabilities:
Family Emergency Reimbursement
Recreation/Family Outings
Bronx Non-Camp Vacations
Camp Reimbursement
Respite Vouchers
Car Service Vouchers
To receive an application or additional information, please contact NYSID directly at (212) 229-3273, (718) 494-6457 or email eliznysid@si.rr.com. The Parent Coordinator at your child’s school also has applications available.
For information about special needs planning, special education advocacy or guardianships, visit www.specialneedsnewyork.com.
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, 
