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Special Needs Kids Part III Part I   Part II Addressing Financial Concerns: The expenses associated with raising children can stretch a family's resources. When a child has a disability, particularly one that involves high-priced medical care, a family can quickly become overwhelmed financially. While it is often difficult to resolve financial concerns completely, there are a number of things parents can do that may help. Charlotte Thompson recommends that, as soon as parents find out that their child has a disability, two actions should be taken immediately. These are: Start a program to organize and manage your new financial demands. "This not only means management of everyday money, but it also means keeping very careful track of your medical bills and payments" (Thompson, 1986, pp. 101-102). There are a number of money management guides available that explain how to do this. Seek information about any and all financial assistance programs. "If the state agency caring for handicapped children is contacted immediately, it may be able to assume financial responsibility for your child's care right from the start" (Thompson, 1986, p. 102). Often, so much attention is focused on the provision of health care that doctors and other medical staff may not mention available sources of financial aid. Many states have passed legislation intended to help families of children with a disability address their financial concerns, but parents will need to be "well focused and persistent" to get the answers they need. Many children with disabilities are eligible to receive Supplemental Security Income (SSI) benefits, based upon their disability. A recent Supreme Court decision (Sullivan v. Zebley) has created changes in the eligibility requirements for these benefits. Because of these changes, many more children are now eligible than in the past. Some children who formerly were denied benefits (i.e., after January 1, 1980) may even be eligible for back benefits. Therefore, it is a good idea for all families with a child who is blind or who has a disability to apply for SSI. If a child is found eligible for SSI, he or she is automatically eligible for Medicaid benefits, even if the family income is higher than what is traditionally required for Medicaid in that state. This is very important for children with disabilities who may have many medical needs. (Clark & Manes, 1992) If your child qualifies for Medicaid, most early intervention services can be paid for by Medicaid. If your child qualifies for Medicaid, it is important to have him or her assessed by a provider qualified to perform the Early Periodic Screening, Diagnostic, and Treatment (EPSDT) program. If an EPSDT program determines that your child has a condition that requires treatment because of "medical necessity," then it can be paid for by Medicaid. Furthermore, each state has a "Child Find" system, which is responsible for locating and assessing children with disabilities. This is required to be free by Federal law. But sometimes, even though there is not supposed to be a waiting list, it can take a long time to get your child assessed. Therefore, it is important to know about what other resources can be used to get help for your child. Private insurance benefits are one such resource. Usually, nursing, physical therapy, psychological services, and nutrition services can be reimbursed by private insurance. In some cases, occupational therapy and speech therapy are also reimbursable. Educational expenses related to a child's disability are only rarely covered by insurance. However, it is useful to keep track of educational expenses, because these are deductible on your Federal income tax returns. Some additional resources to contact in your search for financial assistance include: Hospital social workers; Public health department; Public health nurses; Volunteer agencies; Disability organizations; and State government agencies (usually listed under "State Government" in the telephone book), particularly those departments that oversee programs for children with disabilities. Because searching for assistance may involve a lot of telephone calls, it is a good idea to have paper and pen at hand to record the names and telephone numbers of all those you contact, as well as any referrals they give you. Whether or not you believe your income is too high for your family to quality for financial aid: "...the key is to keep trying -- to get more information, to follow up leads, and to continue applying for various types of financial assistance. This may seem like an endless paperwork maze to you, but with luck some of the paper at the end will be the green kind that can help you pay your child's medical bills. Keep at it." (Thompson, 1986, p. 103) Future Planning: It is not possible for parents to imagine all the stops and detours that they will make as their unexpected journey takes them into the future. But you will probably be thinking at different times about what the future holds for your child. Advocates believe it is important for parents to have expectations about what their child with disabilities can achieve in the future and to encourage their child to develop as much independence as possible, given the nature and severity of the disability (Dickman, 1993). Over the past 20 years, the options for children and adults with disabilities have greatly expanded. Schools have developed specialized educational techniques to promote learning and the acquisition of functional skills that will enable individuals with disabilities to have choices about where they live, work, and play, and who they have as friends. The movement to include individuals with disabilities in the mainstream of school life is growing, with significant pressure coming from parents. The premise behind inclusion is that individuals with disabilities should not be segregated but, rather, should have the same opportunities that individuals without disabilities have -- that is, the same opportunities to go to neighborhood schools, to be educated alongside their nondisabled peers, to participate as fully as possible in school activities. However, for inclusion to work, school systems must provide each student with supports appropriate to his or her needs. Support, training, and technical assistance also must be made available to teachers and to nondisabled peers. Therefore, it is important for parents to be aware of how inclusion decisions are made in regard to their child and to advocate for supports they feel their child, his or her teacher, and the peer group need in order for the inclusive setting to be a successful one. Inclusion, however, means more than just including students with disabilities in mainstream school activities. Students will grow up, leave the school setting. What does the future hold for them as adults? This is, naturally, of great concern to parents, disability advocates, disability organizations, and persons with disabilities themselves. For far too long, students have exited the school years to an adult life that lacked opportunities for employment, further education, or community participation (McLaughlin, 1993). Now, with the help of federal legislation and the advocacy of many concerned parties, adult life for individuals with disabilities holds increasing promise. The Individuals with Disabilities Education Act (IDEA) now requires that school personnel, parents, and each student with disabilities (16 years of age or older, and, in many cases, younger) plan for the student's transition from school to post- school environments, including employment, additional education or training, independent living, and community participation (Wandry & Repetto, 1993). This legislation is intended to prepare youth with disabilities for the adult world and roles they will encounter upon leaving high school, with the purpose of maximizing their participation in the mainstream of society. Furthermore, the Americans with Disabilities Act (ADA) has incorporated into law provisions that guarantee many of inclusion's principles as individual rights. No longer may most child care centers refuse to serve children because they have a disability. No longer may a qualified individual be denied employment because he or she has a disability. Public accommodations must now be accessible to all individuals. Many states have been working actively to establish community- based supports so that individuals with disabilities can lead their lives as independently as possible. Ensure that your child has the opportunity to acquire skills now that will make him or her as independent as possible in the future. Ensure that your child has opportunities to develop social skills that can be used in a variety of settings (regular classroom settings and exposure to many different environments are useful in this regard). Write a will that will provide for your child's care and safeguard his or her eligibility for government benefits. (For more information about estate planning, request a copy of Estate Planning from NICHCY.) Some states now provide for self-sufficiency trusts which allow parents to leave money to a child with a disability without disqualifying that child (even of adult age) from government benefits. Other states require that a special needs trust be established. Teach your child to be responsible for his or her own personal needs (e.g., self-care, household chores). Work with the school and other agencies to ensure that transition planning for your son or daughter takes place and addresses training for future employment, coordination with adult service providers, investigating postsecondary education or training, and participation in community activities. Help your child develop self-determination and self-advocacy skills. Explore different possibilities for living arrangements once your son or daughter is grown. Learning that your child has a disability or illness is just the beginning of the journey. At times, you may feel overwhelmed by the challenges associated with disability and by the strength of your own emotions. And while you may feel alone and isolated, there are many supports available. Other parents can be invaluable sources of help and information. Services are also available -- early intervention services for young children, educational services for school-aged children, services available through public agencies that can assist your entire family. Having access to information and supports may be critical in maintaining a stable and healthy family life. We urge you to read, to talk to other parents who have a child with a disability, to talk with each other and with other family members, and to reach out for assistance when you need it. Back to Part I   Back to Part II   Article Links Copyright © NICHCY (National Information Center for Children and Youth with Disabilities). Authors: Patty McGill Smith, Carole Brown, Samara Goodman, and Lisa Kupper. The above information is presented for educational purposes only, and it is not a substitute for informed medical advice or training. Please do not use this information to diagnose or treat a mental health problem without consulting a qualified health or mental health care provider.