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All parents of children with disabilities worry about the day when they will no longer be able to care for them. While many parents have figured out ways to make life more comfortable for a child with disabilities while they are around, thinking about a time when they can no longer be personally responsible for their child’s well-being can be stressful.
Many parents believe that they can continue to care for their child with special needs by leaving money to a relative. This seems like a good idea because a relative knows the child personally and parents think they can trust them to care for their children. However, relatives are not legally bound to spend the money left to them on the child. In addition to this, the money can be taken from the appointed relative by a number of different parties, including creditors. Also, the money may be lost in a divorce settlement.
Many parents also make the mistake of leaving money to one of their children who does not have a disability, expecting this child to care for the one with special needs. However, this may be a bad idea because it also does not legally bind the child to use this money to care for the sibling with the disability. Also, doing so can pose undue stress on the sibling. If he or she already has to deal with the pain of losing parents, it may be too difficult for the sibling to deal with the added responsibility of caring for a child with special needs.
Rather than entrusting money directly to a relative or sibling, parents should consider forming a Special Needs Trust. Doing so will ensure that the child will be well taken care of and that the money devoted to this cause will not be taken by any other source and must be used for the purpose for which it was intended. Establishing a Special Needs Trust for a child with a disability is the best way to ensure the quality of his or her care in the future.
Parents of children with disabilities are often unsure of where to turn for financial and health care assistance for their children. There are several options available, each with its own qualifications.
Supplemental Security Income, or SSI, provides monthly payments for children with disabilities who are under 18 who meet the government’s definition of disability, and who have little or no income and resources. The amount of SSI that the child will receive varies by state. To qualify, the household’s total income and resources must be below a certain amount, and the child cannot earn more than a certain dollar amount each month.
Social Security Disability Insurance, also known as SSDI, provides benefits to disabled or blind persons who are “insured” by workers contributions to the Social Security trust fund. These contributions are based on the individual’s earnings or the earnings of the spouse or parent according to the Federal Insurance Contributions Act (FICA). Title II of the Social Security Act authorizes SSDI benefits. Dependents of those insured under SSDI may also be eligible for these benefits.
Medicaid can provide access to health care to children with disabilities. Some states will approve a child for Medicaid if he or she is already receiving SSI. Other states require a separate application process. However, SSI is not a prerequisite for Medicaid.
Families with slightly higher incomes may qualify for State Children’s Health Insurance Program (S-CHIP), which covers a wide variety of health care needs. S-CHIP is a good alternative for families who do not meet the requirements for Medicaid, but who cannot afford to pay for private insurance.
There may be other financial and health care assistance options available depending on your state. If you are a parent who would like more information about financial and health care options, contact an experienced special needs planning attorney.
If you have a child with special needs, you should talk to extended family members who may be intending to make a gift or bequest. Extended family members may have your child’s best interests at heart, but they may be unaware that the money they leave to your child could jeopardize eligibility for government benefits. For example, while grandparents may wish to leave part of their estate to a grandchild with special needs, receipt of such funds could disqualify the child for Medicaid, SSI, and other government programs that are key to the child’s quality of life. Any gifts or bequests intended for the child should be made to a supplemental needs trust.
Family members should be made aware of the rules that govern the assets of a child with special needs, and they should make their estate planning decisions accordingly. Referring them to a special needs attorney can help your family members do the right thing in the right way.
An important consideration for parents of a maturing special needs child is housing. Families will need to do significant research into their options to make sure their child is properly cared for when he or she can no longer live at home. If the child will require a group home or some other form or supportive housing, asking the right questions can help the transition go as smoothly as possible. Some of these questions include:
• What is the reputation of the provider with residents and with neighbors?
• Will the provider allow you to meet any of the other residents to see if the atmosphere is right for your child?
• Does the provider have “house rules” and other measures that may be in place to ensure residents will be good neighbors?
• What community safety measures are in place?
• What are the amenities? Are there common areas that will be available?
• Is there a plan to address grievances among residents?
Planning for housing for a child with special needs is a critical step in ensuring his or her future safety and happiness. Start planning early to make sure that all your questions are answered.