Americans are generally living longer and this is also the case for individuals with disabilities. As a result, there are many more cases of caregiver parents losing the ability to provide for their special needs children. According to one count, there are 730,000 people with developmental disabilities living with caregivers who are 60 or older. This figure does not include adult children with other forms of disability nor those who live separately, but still depend on their elderly parents for vital support.
When these caregivers can no longer care for their children due to their own disability or death, the responsibility often falls on siblings, other family members, and the community. In many cases, expenses increase dramatically when care and guidance provided by parents must instead be provided by a professional for a fee.
Planning by parents can make all the difference in the life of the child with a disability, as well as that of his or her siblings who may be left with the responsibility for caretaking (on top of their own careers and caring for their own families and, possibly, ailing parents). Any plan should include the following components:
- A plan of care that carefully establishes where the child with special needs will live, who will be responsible for assisting the person with special needs with decision making and who will monitor the person with special needs’ care. It will help everyone involved if the parents create a written statement of their wishes for their child’s care. They know him better than anyone else. They can explain what helps, what hurts, what scares their child (who, of course, is an adult), and what reassures him. When the parents are gone, their knowledge will go with them unless they pass it on.
- At least one type of special needs trust. In almost all cases where a parent will leave funds at death to a disabled child, this should be done in the form of a trust. Trusts set up for the care of a disabled child generally are called “supplemental” or “special” needs trusts. Trusts designed to aid a person with special needs are commonly known as “special needs trusts” (“SNT”). There are three main types of special needs trusts: the first-party trust, the third-party trust, and the pooled trust. All three name the person with special needs as the beneficiary, but they differ in several significant ways, and each type of trust can be useful in its own way. Parents will typically structure the special needs trust for their child as a third-party trust. This third-party SNT is often set out under a parent’s last will and testament and the share of the estate for the disabled beneficiary are directed to become a part of the SNT. If the disabled beneficiary is named as a direct beneficiary under the Will of a decedent, he or she will likely lose his or her government benefits.
- Trustee Appointment. Choosing a trustee is also an important issue in supplemental needs trusts. Most people do not have the expertise to manage a trust, even if they are family members, and so a professional trustee may be a wise choice. For those who may be uncomfortable with the idea of an outsider managing a loved one’s affairs, it is possible to simultaneously appoint a trust “protector,” who has the power to review accounts and to hire and fire trustees, and a trust “advisor,” who instructs the trustee on the beneficiary’s needs.
- Life insurance. A parent with a child with special needs should consider buying life insurance to fund the supplemental needs trust set up for the child’s support. What may look like a substantial sum to leave in trust today may run out after several years of paying for care that the parent had previously provided. The more resources available, the better the support that can be provided the child. And if both parents are alive, the cost of “second-to-die” insurance–payable only when the second of the two parents passes away–can be surprisingly low.
- Beneficiary Designations. It is imperative that beneficiary designations on Life Insurance, IRA’s, Annuities, & 401k’s and all other accounts be reviewed and updated. Parents should not name the the disabled child as a direct beneficiary of any assets. Instead, the share of these accounts should be directed by beneficiary designation to be paid to the SNT for the benefit of the disabled child. Additionally, discuss with counsel the option to structure the SNT to be what is known as an “Accumulation Trust” for tax deferred retirement assets such as IRA’s. The Accumulation Trust provisions can be utilized to insure the most tax efficient method for having an IRA paid to a SNT.
For assistance developing a comprehensive asset protection plan in Pennsylvania, please contact Douglas L. Kaune, Esquire at (610) 933-8069 or email him at dkaune@utbf.com. Doug’s entire practice is focused on elder law, Medicaid application, estate planning, trust planning, estate administration and protection of clients’ assets from nursing home spending and estate and inheritance taxation. Unruh, Turner, Burke & Frees, P.C. is a full service law firm which has three convenient office locations in Phoenixville, West Chester and Paoli, Pennsylvania. The firm primarily services clients in Chester, Montgomery, Delaware, Philadelphia, Bucks and Berks Counties, but can represent clients throughout Pennsylvania.
