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.
Here are some tips to ensure this:
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.
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
Ruth & Norman Rales Jewish Family Services (JFS), through the Center for Families & Children, offer a number of supports for families with special needs. It includes but is not limited to:
- Emergency Financial Assistance
- Jacobson Family Food Pantry
- Summer Camp Scholarships
- ABA (Applied Behavior Analysis) Therapy
- Adaptive Equipment
- Supportive Shadows
- Respite Care
The Agency for Persons with Disabilities works in partnership with local communities to ensure the safety, well-being and self-sufficiency for persons with developmental disabilities throughout Florida. The agency provides assistance to identify the needs of people with developmental disabilities and funding to purchase supports and services. The developmental disabilities identified in Florida law are: Spina Bifida, Autism, Cerebral Palsy, Prader-Willi, Down Syndrome and Intellectual Disability. Medicaid Waiver helps people to receive long-term care in the community and it is through Agency for Persons with Disabilities.
The Agency for Persons with Disabilities provides support coordinators to assist both children and adults in identifying and securing the supports and services they need to live, work and play in places they chose.
Alpert Jewish Family & Children’s Service Life Planning Program offers educational seminars, individual consultations, advocacy and emotional support to families who have a family member with any type of disability, including intellectual/developmental disabilities, mental illness and TBI. The program assists families with making viable and appropriate future plans for their family members.