67% of parents or caregivers of special needs children are worried about how they will provide for their child upon their retirement. With over 200,000 children with special needs in New York City, there are many people in the same boat as you, looking for resources on how to best serve their families.
Financial planning may seem overwhelming, but is very important for your family's overall wellbeing and security. Half the battle is knowing what's available to you, and how you can best utilize the resources around you for success. This section will cover some key financial aid programs that may assist your family.
The Social Security Administration office manages Supplemental Security Income (SSI), another key resource for you as you plan your financial future. It is a federally funded program (funded by general tax dollars) that makes monthly payments to your family if you qualify. However, your child must meet the eligibility qualification of "disabled" to be approved. These include:
SSI will require information about your income and other financial assets (for instance, your home's value). To learn more, you can read this pamphlet.
Through the Achieving a Better Life Act (ABLE) that was passed by President Obama in 2014, families can establish private tax advantaged savings accounts without giving up any Medicaid or SSI funding they are receiving. Each state has its own implementation of the ABLE program.
These accounts are primarily designed to help fund future needs, similar to a 529 education account. Earnings will grow tax-deferred, and allow savings to be withdrawn tax-free for qualified expenses. A list of all qualified expenses is available on the program website.
Information about qualifications for eligibility and more can also be found by contacting NY ABLE directly at 1.855.5NY.ABLE on Monday through Friday from 8AM to 8 PM.
Medicaid is a government program that was signed into law in 1965 alongside Medicare. It can provide financial assistance for families based on either income level, disabilities, or both. Each state has a slightly different application of Medicaid. In New York State, information about the program can be found at the Department of Health's website. In NYC, you can also call the 311 Information Hotline @ 311 or 1-718-557-1399 directly to learn more about how it may help in your particular situation.
Are you worried about how you can provide for your child after you're no longer around?
Special Needs Trusts (SNTs) can help you to set money aside to pay for things that state and government funded programs may not cover, and plan for uncertainty about the future. Even better, they do not interfere with any funding coming from SSI or Medicaid programs! These trusts can fund important supplemental costs like:
To get started, it's advised to reach out to an attorney who can help to set up this trust. You'll also want to set up a Trustee to manage the investments, and last but not least, a Letter of Intent. For more information on what a Letter of Intent entails, SpecialNeedsAnswers.com has a great post about what to consider.
The Special Needs Alliance is a national organization of attorneys who aim to assist families with special needs. They can help with SNT (Special Needs Trust) creation, special education, and other benefits.
Autism Speaks is a non-profit organization dedicated to helping individuals and families of people with special needs. They have many wonderful resources, including an extensive section on financial planning resources.
Mint.com is a great resource for anyone in need of planning a budget. With a high degree of personalization, and desktop and mobile app accessibility, Mint is a great tool to begin organizing your finances.
Autism Speaks has a handy PDF worksheet kit that can help plan more specifically for the care of a special needs child. It starts by helping you estimate your monthly income sources (including SSI or Medicaid benefits), then helps to capture different categories of monthly expenses that you may have to consider. Using the information on this worksheet can begin to get a handle on your upcoming costs and how much help you may need to apply for.
This section serves to provide context and more detail about several key resources used in the making of this page.
Benefits for Children with Disabilities. Social Security Administration, 2018. Retrieved from https://www.ssa.gov/pubs/EN-05-10026.pdf
This source is an e-pamphlet produced by the Social Security Administration, which describes the administration’s benefits (and eligibility for those benefits) for SSDI – Social Security Disability Insurance. The booklet is laden with Social Security information, covering topics like “Applying for SSI payments,” “Employment support programs for young people with disabilities,” as well as other health care services that may be of interest to parents of children with special needs. The pamphlet format is a welcome change to people who may be exhausted by long, scrolling pages of government information, as it provides a wealth of information in an accessible, easy-to-read format.
Gardner, S. (2016, April 1). How to prepare a financial plan for families with special needs children. Daily News. Retrieved from
Gardner is a best-selling author and speaker and trainer in the financial services industry. This article from the Daily News highlights key considerations and budgetary needs that parents of children with special needs may have. He provides great overarching advice such as creating a team of financial experts to help parents, creating letters of intent, wills, and even special needs trusts (SNTs), while simultaneously sprinkling in key statistics about how important financial planning for a special needs child is.
While laden with helpful information, Gardner also writes in a personal, accessible tone, which helps to alleviate any intimidation for parents around the very complex topic of financial planning. Throughout, he interviews several attorneys and financial planners with expertise in the field, and distills the key takeaways in an easy-to-read article. This piece is a great starting point for parents looking for the basics of what to consider as they start their financial planning journey.
“Medicaid in New York State.” New York State Department of Health, March 2018, https://www.health.ny.gov/health_care/medicaid/
This webpage on the New York State Department of Health’s website details commonly asked questions about the Medicaid program, including what services it provides, how it works, and eligibility requirements. It is presented in the format of a long list of questions which are linked to different points on the same page, so that people can click on a question of particular interest and go directly to the answer they’re seeking. Unfortunately, the site is very text-heavy without any visuals, which may make it difficult to read and perhaps intimidating to some people who don’t know where to begin, as there is no logical order to the questions listed. That being said, a lot of great information about the Medicaid program in New York State is listed, along with links to pertinent information that people may want to read next.
Stuart, M. (2012, September 6). The pros and cons of a special needs trust ensuring your child’s future. [Web log]. Retrieved from
Melissa Stuart is an associate attorney at Cohen & Malad, LLP in Indianapolis, Indiana, and wrote this blog post for Friendship Circle, a non-profit organization in the state of Michigan. This article serves as a great introduction to the concept of Special Needs Trusts, walking readers through the pros and cons so that they can be empowered to make a decision about the applicability to their lives. It also describes how Special Needs Trusts perform a unique role in financial planning, and can help round out a financial program that already consists of services like Medicaid and Social Security benefits.
Writing a memorandum of intent for your child with special needs. (2017, January 30). [Web log]. Retrieved from
The Academic of Special Needs Planners is a network of special needs planning professionals like attorneys, financial planners, and trust officers. The blog section of their website has a lot of great advice and information, without pushing their services or network of professionals on to readers in a distracting way. This article serves as a great introduction to the concept of writing a memorandum (or letter) of intent on behalf of a special needs child. A letter of intent is essential in setting up a Special Needs Trust, but is significant enough in its own right to warrant research before its writing.