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Advocating for your Children!

Parents of a child with special needs must learn to effectively navigate the maze of special education laws and go to bat for their kids. In a nutshell, this means they must learn to be advocates.


1. Learn all you can about your child's special needs

Information is power, and parents need to start with the facts about their child's special needs. Try and keep emotion out of it; parents need to have fact-based knowledge from their child's doctors, specialists, special education experts, parents of kids with similar special needs, attorneys, teachers, and anyone else who can provide information.


2. Ask lots of questions and listen to answers

Become like a reporter: Ask questions like, "who, what, where, when, why and when" and then listen carefully to the answers you receive. Research relevant questions and then document responses instead of simply relying on your memory. Learn how to best ask questions and don't come across as antagonistic or defensive to get the best open and honest replies.

3. Become a "pseudo-lawyer" in special education law

Parents of special education kids don't truly need to become lawyers; however, it is good to become extremely knowledgeable about special education law. Learn the details behind the federal law that effectively created special education, now known as the Individuals with Disabilities Education Act (IDEA).


4. Always avoid the blame game

An adversarial relationship between parents and teachers is typically never in the best interest of the child. It's sometimes easy to fall in the trap of blaming others or even pointing the finger at bureaucracy for disappointments or a particular situation. But blame doesn't typically result in anything more than bad feelings and an ill-willed situation. Instead, avoid blame, and try the opposite approach. Keep calm, know the facts, and advocate about meeting your kid's unique needs.


5. Be a problem-solver, not a problem-maker

Working together to solve problems with a child's teacher or child care provider typically nets better results than becoming a problem maker. Propose solutions or create a possible plan that works best for child-parent-provider/teacher. Be open-minded and hear proposed solutions from the educational side as well.


6. Think long-term and become a futurist

Parents not only have the responsibility of planning their child's education and requirements today; they are also faced with the difficult task of thinking long-term. In other words, parents must be active futurists in setting up their child's successful life down the road.


7. Become a master planner

Parents typically have goals for their kids, and families of special education students in particular should establish goals along with a strategy to obtain them.


8. Really get to know child care provider or teacher

Don't assume that child care providers or teachers don't want to meet your child's unique needs and provide educational benefits. Most do. However, a wide range of need combined with limited resources often create the potential for conflict between what reasonably can be provided vs. parents wanting what they believe is "best" for their kids. Parents and providers/teachers should do everything possible to establish a positive, partnership-based learning approach and team together.

Advocating on a Local and State Level

According to the Office for People with Developmental Disabilities

The following hyper link (cut and paste into your browser), contains current COVID-19 updates on reopening services and supports through OPWDD.

While COVID-19 has changed our focus from OPWDD cuts to health and safety requirement, we still need to continue to keep funding and benefits at the forefront of our minds. 

The current Administration has called for drastic cuts to Medicaid, through Medicaid block grants, that would fundamentally compromise the program—making it less reliable for the people who depend on it and shifting costs to states and even to consumers.

Medicaid covers six million New Yorkers.  For many of the 130,000 New Yorkers with intellectual and developmental disabilities (I/DD) known to OPWDD, Medicaid is a life line.  Medicaid funds over 90% of services for people with I/DD, who typically require more complex and costly services than Medicaid recipients without disabilities, and they typically need such services throughout their lifetimes.

A Medicaid block grant would be a fixed amount of money from the federal government to the states to spend on health care for people who are poor, elderly, or have disabilities.

The most critical Medicaid services for people with I/DD are:

  • Acute care – including hospital care, physician services, behavioral health, dental, laboratory, and x-ray services.  These acute care services are mandatory which means they must be provided to everyone who is eligible.

  • Long term services and supports – including help getting dressed, taking medication, preparing meals, managing money, getting in and out of bed.       These are optional services: the states choose whether to cover them.

  • HCBS Waiver Services — including residences, day programs, community habilitation, self-direction options, recreation, and respite. These, too, are optional.

Medicaid is a shared program between states and the federal government and each state pays for part of it.  The federal share of Medicaid for New York is 50% of costs generally, and a slightly higher share for specific services.

Based on previous federal block grants and the statements that key Administration officials have made about their plans, we can expect that a Medicaid block grant would:

  • Cap the amount the federal government spends on Medicaid

  • NOT increase this amount to keep up with health care inflation

  • Radically cut the federal share of Medicaid

Block grants could force bad choices and cause substantial conflict as groups with diverse needs compete for scarce dollars.  While there is no certain way to know what New York State will do, here are some of the possible scenarios:

  • Cut benefits, eliminate entire categories of services, or limit the number of people who could get such services as Home and Community Based Waiver Services, personal care, prescription drugs, or rehabilitative services.

We urge Congress to fiercely oppose Medicaid block grants. And in the event such grants are enacted, we urge New York’s legislators to fight to preserve critical services for people with I/DD.

  • Move people into institutions or other large congregate care settings when it is cheaper to do so.

  • Reduce the number of people served by making it more difficult to meet financial or other eligibility criteria.

  • Increase the cost burden on the individuals or family members.

  • Slash the amounts Medicaid pays to doctors and other providers.

Services to people with disabilities would likely be reduced by New York State if Medicaid is turned into a block grant because people with disabilities and the elderly account for most of the Medicaid spending.  While children and adults make up about 75 percent of Medicaid enrollees, they account for less than a third of the spending.  In contrast, the elderly and individuals with disabilities make up about 25 percent of enrollees but about 66 percent of spending. The elderly and people with disabilities use health care services more often, use more health services, and are more likely to use long-term services and supports. We are very concerned that states may slash the supports that help people with I/DD live safe, independent, productive lives.

In fact, block grants aren’t actually effective because they don’t control the cost of health care, which continues to rise as people get older and use more health care services, and as the general cost of all health care increases.  Although block grants shift more of the cost to the states and likely the individuals, costs may actually rise significantly because people who lose their health care or can’t afford it will stop seeing their doctors or taking their medication.  When that happens, existing health conditions worsen, leading to more doctor or hospital visits and more costs down the road, as the individual faces more illness and hardship. Moreover, this reduces the amount of money left for other populations, such as people with I/DD.

If home and community based services are reduced, it will likely lead to greater levels of costly and unnecessary institutionalization or homelessness.  If people are not provided needed services they may not be able to work, learn, or function in the community. This creates lost productivity from the individual and family members if they are called upon to provide care when there are no other options.

We must make clear to our members of Congress that block granting Medicaid is not the answer to our nation’s deficit, especially at a time when large-scale transformation efforts are in place to enhance the value of services provided under Medicaid.  We must tell our Congress members what exactly is at stake, The health and well-being of people with I/DD will be at risk if it becomes more difficult or costly to access needed services.


We are seeing and hearing more and more about possible changes to the Medicaid Program. It’s easy to read between the lines:

Changes = Cuts. Big ones.

Cuts to Medicaid, especially in the form of block grants, pose significant access risks to health care and long-term care, especially for people with disabilities. These services and supports enable individuals to exercise their right to live and participate in their communities.

Examples that won’t surprise you:

  • A child with cerebral palsy who relies on Medicaid for a wheelchair, physical therapy and transportation to get to and from school, medical appointments and after-school programs.

  • A woman with an intellectual disability who works as a part-time assistant at your local grocery store who uses a Medicaid home attendant to help her eat, bathe, dress, and get to work on time.

  • A man with significant developmental disabilities whose well-being and community engagement are completely dependent upon his group home, day services, transportation and medical and behavioral health services funded by Medicaid.

What if these three individuals couldn’t get adequate medical care or therapy, or were forced into a nursing home or other large facility because they couldn’t get the services and supports they need?

Now more than ever we must work together to protect access to health care and community living and working options for people with disabilities.

Here are some helpful facts about Medicaid (some courtesy of the Arc):

  1. Medicaid helps make life in the community possible for many people with disabilities.

  1. Together, state and federal Medicaid provide more than 75% of the funding for services for people with intellectual and developmental disabilities (I/DD)—over 90% in New York State.

  1. Medicaid provides health care for one in five Americans, including people with disabilities, working families, children, and seniors.

  1. Medicaid is the primary health insurance program for people with disabilities. Over 10 million non-elderly people with disabilities are covered by Medicaid. People with disabilities often lack access to employer-based or other private coverage and typically have greater medical needs, and may need essential medical supplies like a wheelchair.

  1. Medicaid is federal-state partnership that provides matching funds on a state-specific basis.

  1. New York is 50/50 state. For every dollar New York spends on Medicaid services, the federal government provides, on average, an additional dollar.

Many other states receive a higher-percentage match than New York. With federal approval, New York designs services to meet their residents’ needs. Under the current structure, the federal government helps states cover costs, and in turn states are required to offer specific benefits to certain groups of people, including those with disabilities.

So what could happen if we are not vigilant?   Block grants to states.

This is very different than the current Medicaid “federal share” model that is pegged to the dollars states put into the program. While Congress has yet to make decisions about how block grants could be designed, the assumption is that the federal government provides a fixed amount of money (that’s the block) to each state based on the number of people enrolled. The current funding system provides for an increase in funding when the cost of providing covered services to eligible individuals goes up. A block grant specifically restricts federal government spending on Medicaid, regardless of the needs of the people receiving services. There might be a small growth adjustment for increases in enrollment but it is unlikely that it would be sufficient to make up for the overall cuts to the program.

During our program today you will see that the needs of people with disabilities who rely on Medicaid are not decreasing – quite the contrary – in many cases they are increasing. This is why block grants are a direct threat to the many years of progress we have made in ensuring the rights of people with disabilities in New York State. Block grants will cause a decrease in vital services for New Yorkers with disabilities.

What happens then?

Constraining eligibility for Medicaid, limiting services and supports, and reducing payments to agencies and providers who are already cash-strapped. This will likely grow waiting lists for services and promote even greater uncertainty for individuals with disabilities, their families and the organizations that support them.

Slashing Medicaid through block grants or other means is an attack on the most vulnerable members of our society.

Is this what we’ve become as a country?

Don’t we want healthier, more productive and engaged fellow citizens, not sicker and marginalized ones? Of course we do. Let’s make sure all of our elected officials understand this threat and demand that do all they can to move this already great state and country forward, not backward.

















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