On February 24, 2009, NAA-NY Metro was extraordinarily fortunate to have four experts in the field of special needs financial planning present valuable information to our group. Stuart Flaum, Anthony Marchiagiano, and Travis Dauchy -- financial strategists with AXA Advisors and its Special Needs Family Planning Group -- and Wendy Sheinberg, a partner in the law firm Davidow, Davidow, Siegel & Stern, LLP, presented to the group on the very specialized issues concerning future planning for our special needs children. Stuart is an active member of our group (and many other organizations benefiting children with ASD and other special needs) and pulled together this wonderful team of professionals, who not only were incredibly knowledgeable, but also truly caring about children with special needs and their families.
The point that really struck me -- like a sledgehammer -- is that hope for a child’s ability to live independently cannot cloud a parent’s judgment in financial planning for other possible eventualities. We cannot let our hope preclude us from recognizing that our children may need some protections and assistance in their adult lives, particularly when we no longer are here. As parents, grandparents, and caregivers of children with ASD who are fighting so hard, using many different treatment modalities, to improve our children’s health and maximize their potential, we are driven by hope that our children will be able to lead the most independent and fulfilling lives possible. I truly believe with all these efforts many of our children will achieve great independence. However, that is not a reason to avoid wise financial planning. If a parent ignores these financial issues -- hoping that the necessity for special needs family planning will “go away” -- in the end, the child’s well-being could be seriously compromised. Poor financial planning and failure to establish the proper trust vehicles can significantly reduce the funds available to meet a child’s needs and may also result in loss of eligibility for critical governmental programs. The speakers emphasized the need to maintain Medicaid and SSI eligibility, not only for the financial support (which many will need) but also because eligibility in these programs often is a requirement for participation in many community based programs for adults with special needs.
I learned that one size definitely does not fit all in special needs financial planning. There are different types of special needs trusts, depending, for example, on how the trust is funded. Also, there are different ways to structure wills and trusts, some of which offer flexibility, particularly while parents are still alive, to adjust for changing circumstances. In setting up a trust and other means to provide for a family member with special needs, there are specific requirements that must be met as well as pitfalls to avoid. Professional help is advisable to ensure that your plans will properly protect your child. Moreover, it is better to begin planning sooner rather than later. If we wait to plan until a child is older (and the parents too!), we may end up scrambling at a time of crisis to put protections in place and not make the most appropriate or well thought through decisions.
Ms. Sheinberg also spoke about guardianship under New York law. Depending on the circumstances, it may be wise to have a guardian in place so that, when a child turns 18, the guardian is ready. Guardianship of an adult person with special needs can be critical, especially in areas such as medical care, where privacy laws might otherwise prevent the parent or caregiver from having access to important information to allow them to help the person with special needs make appropriate medical decisions. Guardianship also can help prevent a person from being taken advantage of financially by unscrupulous people. Without a guardianship in place, unwinding such transactions becomes difficult, if not impossible.
The speakers also emphasized getting other family members involved in or aware of the future planning for a special needs child so that they can learn the best ways to provide financial assistance and/or gifts to the child. Moreover, it is important to find the right trustees for your special needs trust and it is probably wise to have two trustees, for a built in system of checks and balances.
The AXA team also provided each of us with a “Family Love Letter” -- an easy-to-use format to provide critical background information about your family and your child. This document puts in one place information about finances, medical care, and other key information. Further, Ms. Sheinberg encouraged parents to create a “Letter of Intent” -- what she described as an owner’s manual for your child. Use the letter (or an audio or video recording) to educate people about your child’s likes and dislikes; important people, places or things in your child’s life; areas of interest; special dietary and medical needs; your child’s areas of excellence and areas where they need help -- all the information that would enable someone to provide for your child socially and emotionally, not just financially, if the need to step into the role of caregiver should arise. Make sure those who need the information contained in these tools have copies or know where to find them. Also, update these documents regularly so that they contain the most current information about your child and your family.
Bottom line -- financial planning for your special needs child is not giving up on your hope for your child's independence -- it simply is a smart move, especially in these uncertain financial times!
Finally, many thanks to Stuart and his wife for the wonderful sandwiches and drinks -- they really went above and beyond!
The point that really struck me -- like a sledgehammer -- is that hope for a child’s ability to live independently cannot cloud a parent’s judgment in financial planning for other possible eventualities. We cannot let our hope preclude us from recognizing that our children may need some protections and assistance in their adult lives, particularly when we no longer are here. As parents, grandparents, and caregivers of children with ASD who are fighting so hard, using many different treatment modalities, to improve our children’s health and maximize their potential, we are driven by hope that our children will be able to lead the most independent and fulfilling lives possible. I truly believe with all these efforts many of our children will achieve great independence. However, that is not a reason to avoid wise financial planning. If a parent ignores these financial issues -- hoping that the necessity for special needs family planning will “go away” -- in the end, the child’s well-being could be seriously compromised. Poor financial planning and failure to establish the proper trust vehicles can significantly reduce the funds available to meet a child’s needs and may also result in loss of eligibility for critical governmental programs. The speakers emphasized the need to maintain Medicaid and SSI eligibility, not only for the financial support (which many will need) but also because eligibility in these programs often is a requirement for participation in many community based programs for adults with special needs.
I learned that one size definitely does not fit all in special needs financial planning. There are different types of special needs trusts, depending, for example, on how the trust is funded. Also, there are different ways to structure wills and trusts, some of which offer flexibility, particularly while parents are still alive, to adjust for changing circumstances. In setting up a trust and other means to provide for a family member with special needs, there are specific requirements that must be met as well as pitfalls to avoid. Professional help is advisable to ensure that your plans will properly protect your child. Moreover, it is better to begin planning sooner rather than later. If we wait to plan until a child is older (and the parents too!), we may end up scrambling at a time of crisis to put protections in place and not make the most appropriate or well thought through decisions.
Ms. Sheinberg also spoke about guardianship under New York law. Depending on the circumstances, it may be wise to have a guardian in place so that, when a child turns 18, the guardian is ready. Guardianship of an adult person with special needs can be critical, especially in areas such as medical care, where privacy laws might otherwise prevent the parent or caregiver from having access to important information to allow them to help the person with special needs make appropriate medical decisions. Guardianship also can help prevent a person from being taken advantage of financially by unscrupulous people. Without a guardianship in place, unwinding such transactions becomes difficult, if not impossible.
The speakers also emphasized getting other family members involved in or aware of the future planning for a special needs child so that they can learn the best ways to provide financial assistance and/or gifts to the child. Moreover, it is important to find the right trustees for your special needs trust and it is probably wise to have two trustees, for a built in system of checks and balances.
The AXA team also provided each of us with a “Family Love Letter” -- an easy-to-use format to provide critical background information about your family and your child. This document puts in one place information about finances, medical care, and other key information. Further, Ms. Sheinberg encouraged parents to create a “Letter of Intent” -- what she described as an owner’s manual for your child. Use the letter (or an audio or video recording) to educate people about your child’s likes and dislikes; important people, places or things in your child’s life; areas of interest; special dietary and medical needs; your child’s areas of excellence and areas where they need help -- all the information that would enable someone to provide for your child socially and emotionally, not just financially, if the need to step into the role of caregiver should arise. Make sure those who need the information contained in these tools have copies or know where to find them. Also, update these documents regularly so that they contain the most current information about your child and your family.
Bottom line -- financial planning for your special needs child is not giving up on your hope for your child's independence -- it simply is a smart move, especially in these uncertain financial times!
Finally, many thanks to Stuart and his wife for the wonderful sandwiches and drinks -- they really went above and beyond!
