Having a child with special needs can be very expensive and time-consuming. Fortunately, there are funds available to assist families. It is also important to plan ahead and put certain pieces in place early on to ensure that if something happens to you, your child will be cared for and have the means to survive.
Put Together Your Financial Plan
Get the right guidance. Choose financial services professionals, attorneys and CPAs who have the knowledge and experience to serve the special needs community.
Create a Life Care Plan. A Life Care Plan is a comprehensive plan that incorporates basic needs, goals and strategies for achieving the best quality of life in every area of life now and for the long term.
Include yourself in your plan. Ensure that siblings and parents are cared for, too. A careful financial protection strategy should incorporate the entire family.
Make an estate plan. Some families may be interested in tax-saving advantages, establishing a third-party trust for the person with special needs, providing inheritances for their other children and more. The complexity of one’s estate plan depends on his/her financial situation. Individuals are encouraged to seek advice from their own tax or legal counsel.
“A human being mints many coins from the same mold, and they are all identical. But the holy one, blessed by God, strikes us all from the mold of the first human and each one of us is unique.”
The Achieving a Better Life Experience Act of 2014 (ABLE) – states that its purpose is to (1) encourage and assist individuals and families in saving private funds for the purpose of supporting individuals with disabilities to maintain health, independence, and quality of life; and (2) provide secure funding for disability-related expenses of beneficiaries with disabilities that will supplement, but not supplant, benefits provided through private insurance, title XVI (Supplemental Security Income) and title XIX (Medicaid) of the Social Security Act, the beneficiary’s employment, and other sources. For more information, click here.
Name guardians. If your child will need a guardian, it is important to consider exactly what responsibilities that person would have and the financial support a guardian would need. A Special Care Planner can explain the role of a guardian and walk you through “what-if” scenarios.
Learn about government benefits. Your child may be eligible to receive state and federal benefits. Look into Medicare, Medicaid and Social Security Disability Insurance. You may also want to check the websites for the State Children’s Health Insurance Program and the Children with Special Health Care Needs (CSHCN) provision of the Social Security Act.
Have open communication and write a Letter of Intent. Once you have begun your Life Care Plan, it’s valuable to let close friends and relatives know that you have a Life Care Plan in place. Their special relationship with the person with special needs may lead them to consider naming your loved one in their will, or as a beneficiary to a life insurance policy they acquire, or they might wish to give them a monetary gift. However, this generous act could cause your loved one to become ineligible for public benefits being received. Another wise step is to develop a Letter of Intent. This is a document that records everything you would want someone to know about your loved one if you should suddenly become unable to provide care.
Note: The Letter of Intent is more like personal letter, rather than a more formal legal document. It is used to supplement the special needs plan in order to provide additional information. Parents often use it to address wishes that they have which do not really fall under the purview of legal requirements. This document is also useful for addressing information about your child that is subject to change. While various other special needs planning documents tend to be more static, the Letter of Intent can be changed as the information is updated. Finally, a Letter of Intent is used to discuss topics that are just too lengthy to include in the special needs trust.
Maintain a good health plan. Be sure you have the best health care plan available to you. If you and your spouse both work, annually review the health plans your employers offer and choose the one that provides the benefits your family needs at the most affordable price. Understand which services and procedures are covered and appeal if claims are denied.
Source: Special Education Advisor
Here is an overview of the application process for disability benefits if you are applying for a child under 18 years of age:
And here is an overview for Disability benefits for people over 18 years of age but who were diagnosed before 22 years of age:
And here is the general website link:
Here is the link for Florida programs and services for people with disabilities:
The Melvin J. & Claire Levine LifePlanning® Program offers education, advocacy, consultation and emotional support to parents, siblings and caregivers of a family member with a disability. This program encourages and assists in planning for the future.
Alpert JFS’ Pooled Trust allows disabled individuals and seniors to place income and or assets that are over government benefit limit requirements for Medicaid into the trust, so that they can qualify for much needed government benefits and be instantly eligible.
The Agency for Persons with Disabilities (APD) works in partnership with local communities and private providers to assist people who have developmental disabilities and their families. APD also provides assistance in identifying the needs of people with developmental disabilities for supports and services.
ABLE Accounts, which are tax-advantaged savings accounts for individuals with disabilities and their families, were created as a result of the passage of the Stephen Beck Jr. Achieving a Better Life Experience Act of 2014 or better known as the ABLE Act. The beneficiary of the account is the account owner, and income earned by the accounts will not be taxed. Contributions to the account, which can be made by any person (the account beneficiary, family, friends Special Needs Trust or Pooled Trust), must be made using post-taxed dollars and will not be tax deductible for purposes of federal taxes; however, some states may allow for state income tax deductions for contributions made to an ABLE account.
The Hebrew Free Loan Association of South Florida, Inc. (HFLA), is a a 501(c)(3) non-profit organization and offers interest-free loans to Jewish individuals and families in need and who may not qualify for normal loan resources. HFLA personal loans of up to $5,000 provide financial assistance for situations such as but not limited to emergencies, medical and dental expenses, car and housing repairs, life-cycle events, early childhood and continuing adult education, divorce, immigration costs, victims of domestic violence, mortgage and rental costs, etc.
Administration on Developmental Disabilities
Children with Special Health Care Needs provision of the Social Security Act
Social Security Administration
Social Security Disability Benefits
The Florida Department of Health