by Thomas D. Begley, Jr., CELA
Representing clients in connection with planning for children with disabilities involves a lot more than simply preparing documents. Many lawyers who enter the field of Special Needs Planning have family members who suffer from disabilities and have had first-hand experience with the problem. Good legal advice begins with understanding the problem. For most parents, the concern is what will happen to the child after the parent(s) are gone. While the parents are alive, they will do whatever it takes to achieve the best life possible for their child with disabilities. After they are gone, the problem becomes who will take over. The lawyer’s job includes helping the clients identify a lifestyle that they want their child to have, advising the client as to how to fund that lifestyle, introducing the client to resources that are available in the disability system including potential trustees, and also understanding the challenges faced by other parents in similar situations. It is important that the lawyer understand the parents.
Parents of children with disabilities lead a much different life than parents with children without disabilities. Upon learning that their child has a diagnosis of disability, the first reaction for many parents is denial. Denial rapidly merges with anger, which may be directed toward the medical personnel involved in providing the diagnosis, fear is another immediate response. This is largely fear of the unknown and fear of the future. Other emotions include Guilt that the parents themselves may have caused the problem, and Confusion revealing itself in sleeplessness, inability to make decisions, and mental overload. Parents often feel powerless to change what is happening, and it is very difficult to accept. There is disappointment that the child is not perfect. Some parents feel rejection toward the child, toward the medical personnel, or toward other family members.
It is recommended that parents try to understand that they are not alone, and that they seek advice of another parent who also has a child with a disability. Parents should rely on positive sources in their lives, such as ministers, priests and rabbis, good friends, or a counselor. They should also be advised to take one day at a time. Parents are also advised to learn the terminology of disability. Parents should seek and obtain accurate information. Write down questions before meetings, and get written copies of documentation from physicians, teachers and therapists. It is a good idea to buy a three-ring notebook and compile the information. Parents should not be afraid to show emotion and should not be intimidated by medical or educational professionals. They should learn to deal with natural feelings of bitterness and anger. Parents must try to maintain a positive outlook. They should seek out programs for their children. It is critically important that the parents care for themselves. They can’t help their children unless they themselves are strong. They must get sufficient rest, eat well, take time for themselves, and reach out to others for emotional support. They should avoid self-pity. They should develop and maintain a daily routine. The fact that the child has a disability does not make them less valuable, less human, less important, or less of need for parental love and parenting.
The National Information Center for Children and Youth with Disabilities (NICHCY) recommends that parents join a parents’ group, read materials by and for parents, find out about all services available to their children, including special education, early intervention, and related services. These services can range from feeding support from a nutritionist in a hospital to developing a complete physical therapy program for an infant with Cerebral Palsy. A plan can be developed called an “Individualized Family Service Plan” (IFSP). Services are offered through both public and private agencies. When a child reaches school age, an “Individual Education Program” (IEP) should be developed.
Relationships between parents are a key factor. Frequently, parents with children with disabilities divorce. Often, one of the parents, commonly the father, cannot take the situation and leaves. Ideally, duties of providing care should be assigned to both father and mother. Another issue is siblings. For many siblings, the experience is positive and enriching. It teaches them to accept other people the way they are. In contrast, other siblings experience feelings of bitterness and resentment toward their parents or their brother or sister with a disability. They may feel jealous, neglected, or rejected as they watch most of their parents’ energy, attention, money, and psychological support flow to the child with special needs. NICHCY advises that parents encourage their children to assume responsibilities, such as doing chores. This develops a sense of pride in the child with disabilities. Conversely, if the child with disabilities does not contribute, they may develop negative feelings, such as they are not capable of helping. The nature and extent of the disability may affect how much he or she is able to participate. When the child is ready, the nature and extent of the disability should be discussed with the child. Self-advocacy should be encouraged. Grandparents and other family members must be given the opportunity to know the child with disabilities, so that they can understand the child’s strengths and needs. Parents should learn to work with professionals for the benefit of the child and family.
Parents of children with disabilities should consider buying long-term care insurance. Few things that can ruin retirement are the expense of long-term care and having a child who can’t work. These can be extremely financially draining. Long-term care insurance will ensure that badly needed funds will be available to fund a Special Needs Trust (SNT) and provide for the child after the parents are gone.
Begley Law Group, P.C. has served the Southern New Jersey and Philadelphia area as a life-planning firm for over 85 years. Our attorneys have expertise in the areas of Personal Injury Settlement Consulting, Special Needs Planning, Medicaid Planning, Estate Planning, Estate & Trust Administration, Guardianship, and Estate & Trust Litigation. Contact us today to begin the conversation.
 Parenting a Child With Special Needs, NICHCY News Digest, ND 20, 3rd Edition, 2003.