As parents, our role as guide, counselor, and piggybank is ever-changing while raising our children. We anticipate guiding them through their teenage years and sending them off to college. We hope they will find a fulfilling career, meet someone special and become independent and productive members of society who, one day, will give us grandchildren to spoil. For parents of special-needs children, the future is a very different picture.
Parents of special-needs children need to consider that their child may never be able to live a completely independent life. The child may never have a career, may not be able to manage their own finances nor be able to make complex decisions about their healthcare. These parents anticipate being a source of support in every way for their child for the remainder of their life. They must also put together a plan for care to continue beyond their lives to cover the remainder of their child’s life. Special needs planning must be comprehensive and should include medical, social and residential, financial, and legal aspects.
In a perfect world, parents could assume their other children would step up to take care of their sibling with special needs after they’re gone, but reality is far from perfect. Parents fail to consider the possibility that something may happen to the child who is slated to take over support and guardianship of their sibling or that the designated sibling is not in a position to take over the care of their brother or sister. The following is a brief summary of some of the issues that families should consider:
Social and Residential
Where will my child live and who will look after him or her? Many parents of children with special needs keep them at home with them. After all, who is better at taking care of their child than they are? The challenges with this decision are that the parents will continue to age and will eventually no longer be able to care for their child. A 60-year-old special-needs child who has never lived independently will be unprepared to live independently when mom and dad pass away. This person will have limited socialization experience and virtually no emotional support system in place if there is no advanced planning for this transition.
In anticipation of this, many parents are looking into other residential options for their special-needs children before they are needed. This allows the parent to participate in and oversee the transition to offer guidance and support. Families also turn to social service agencies to bring in case management during the child’s life when the agency can work with the parents and the child, in preparation of providing support once the parents can no longer participate or are no longer alive.
How will my child afford to live? Families of all different economic backgrounds approach this issue with the same initial question; how much money will my child need? Of course, the answer depends upon the unique needs of each child, but a financial advisor is always a good place to start. They will take into consideration costs of living, including housing and medical needs, what support needs to be put into place, i.e. case management, and what, if any, government programs will be available to the individual (ex. Social Security disability, Medicare and Medicaid) versus the anticipated expenses to support and maintain the child.
Our Attorneys can recommend the use of appropriate trusts to help protect the child’s money so as not to jeopardize the child from being approved for or receiving government benefits such as Medicaid and SSI. The challenge for many parents is planning on how to fund the anticipated costs of living for their child for the remainder of that child’s lifespan, considering the likelihood of future inflation and the ultimate aging and increased needs of the child. Some families are fortunate enough to have the resources to accomplish this without stress, while others are not that fortunate and will need to employ a combination of savings, self-sacrifice and life insurance in order to provide sufficient funding.
What can the lawyers at Kitroser & Associates do to help me? Parents of special-needs children in Florida often become “Guardian Advocates” for their children through a Court proceeding. Once a child reaches adulthood (age 18), the parents lose the right to make medical and financial decisions for that child. Guardian Advocacy recognizes that many children with special needs will require someone else to continue to make medical and financial decisions for them even into adulthood. Additionally, our lawyers can create Supplemental Needs Trusts to shelter assets for persons on SSI and Medicaid which enables a family to place funds into a trust that will be a source of financial assets for their child without disqualifying them from receiving those important benefits.
In summary, the issues facing families with special-needs children are significant and complex, requiring knowledge that covers a variety of social, economic and legal issues. Families should start planning early to provide their special needs children with the greatest level of support that each family has to offer.