Planning for the future of a child as he or she transitions into adulthood is full of challenges for both the child and the parent. Children with special needs and their parents face an additional set of challenges. Preparations must be made for living arrangements, financial arrangements and the variety of caregivers that may be involved in the child’s development and adult life.
As a child with special needs approaches the age of 18, a variety of circumstances change. Programs that are available to help with the care of minors may no longer be available for adults. Leaving the public school system and pursuing a post-secondary education brings with it a new set of responsibilities. Eligibility for public financial benefits is subject to strict rules. Health care decisions are not automatically left to parents or guardians.
Financial planning for a child with special needs is the first step in providing a solid base of lifetime support. Once the child turns 18, his or her income will be used to determine eligibility for public benefits like Supplemental Security Income (SSI) and Disability. Earning too much because of contributions from parents will cause the loss of public benefits. This can be avoided through a Supplementary Needs Trust. Funds paid into the Trust will not be counted as income and therefore will not affect eligibility for benefits. However, the funds from a Supplementary Needs Trust can only be spent in certain ways. Planning for lifetime care must include instructions as to how the funds in the Trust are to be distributed and who will manage the trust.
Transitioning to adulthood also requires the use of more decision making skills. Parents of a child with special needs are used to making decisions for their child. As a child approaches adulthood, parents should make a determination about whether or not he or she will be capable of making appropriate decisions. In some cases, parents may need to petition for guardianship so that they can continue making important decisions. In these cases, parents will also need to appoint successor guardians to care for the child when they are not longer able.
Alternatives to guardianship do exist and may be a better option depending on the individual. The child turning 18, if he or she understands, can execute a durable power of attorney and create a healthcare proxy. This will provide for an agent to handle financial decisions and an agent to handle healthcare issues without the hassle of applying for guardianship.
Some children with special needs may wish to continue with education beyond high school. It is important for these students and their parents to understand their rights at a post-secondary institution and know how those rights differ from the rights they had in high school. Post-secondary institutions may not discriminate against students with disabilities, but they are not required to identify the special needs of their students as public schools are.
If a student believes that they may need a college to make arrangements to meet their needs, then they will need to request an academic adjustment. Academic adjustments include things like priority registration, reducing a course load, providing note takers or sign language interpreters, providing extended time for testing and equipping school computers with screen-reading. It is the responsibility of the student to request such an adjustment.
Another important consideration for parents of a maturing special needs child is housing. At some point, living at home will no longer be an option. Families will need to do significant research into their options. Will the child be able to live alone? Or will he or she require a group home or some other form of supportive housing? This should be decided well in advance so that it is not an issue during the stress of a parent’s illness or death.
Growing up and moving into adulthood is difficult for any adolescent, and even more so for a child with special needs. However, appropriate planning can help make the transition go more smoothly for the whole family.
Bernard Krooks is a New York Elder Law and New York Estate Planning lawyer with offices in White Plains, Fishkill, and New York, New York. To learn more about New York elder law, New York estate planning, NY elder law, New York special needs planning, visit Littmankrooks.com.