HELP IN THE COMMUNITY

There are many wish-granting organizations that supply trips or special gifts to children with terminal illnesses. Your son with DMD will probably benefit the most from this kind of program when he's between 10 and 15.

Psychological and Emotional Help

Young people may be able to get some emotional support through guidance counselors, school psychologists and social workers available through the school system.

As he gets into his teens, it may be particularly valuable for your son to participate in a peer group, which would allow him to freely share feelings with others his own age (disabled or not) away from parents and family. Ask at his school, at MDA and at community centers if such a group exists or could be formed.

If needed, parents may wish to consider seeking individual counseling or psychotherapy for themselves. Health insurance may provide some coverage for this kind of treatment.

Independent Living Centers

The last several decades have seen a movement away from the outmoded notion that individuals with severe disabilities should be kept at home or in institutional settings, away from the mainstream of society.

Instead, greater emphasis has been placed on the concept that people with disabilities should be encouraged to live on their own and fully participate in the community. Legislation such as the Rehabilitation Act of 1973 and the Americans with Disabilities Act of 1990 has been integral to this important shift in perspective.

Many young men with DMD opt to continue living with their parents when they reach their adult years. But others may wish to have the experience of living on their own, and some may have to do so in order to work or attend college. For these individuals, independent living centers (ILCs) may be of considerable assistance.

ILCs are generally non-residential, community-based, nonprofit organizations that can be an excellent source of information, services and advocacy for people with disabilities. Although services provided by ILCs vary from state to state, most ILCs can provide information about: accessible and affordable housing; independent living skills training; legal advocacy and technical assistance on disability laws; personal assistance services; employment counseling, training and placement; and travel and accessible transportation.

Ask your MDA health care service coordinator or social workers at local schools or hospitals to find out about ILCs in your area.

You may also wish to inquire about group homes. These are houses in residential areas where a small group of people with disabilities live with one or more caregivers. Often they are initiated by parents.

Vocational Rehabilitation Services

The 1973 Rehabilitation Act resulted in the establishment of Vocational Rehabilitation (VR) offices in each state. VR offices are jointly funded by the federal and state governments for the purpose of providing an array of services to individuals with disabilities that will help them obtain and maintain gainful employment.

Eligibility for VR services is based on two requirements: 1) the individual's disability must present a significant obstacle to employment, and 2) the individual must be of an employable age and able to achieve employment with the help of VR services.

VR services vary from state to state. In many states, VR offers medical care, orthopedic equipment, personal assistance services, counseling, aptitude testing, higher education referral, job training and placement as well as the provision of select tools, uniforms, equipment and licenses. The services may also include allowances for transportation and accessibility modifications at employment sites.

VR counselors work together with those who are eligible to develop Individualized Written Rehabilitation Programs (IWRP). The IWRP defines what an individual's vocational goals are and what VR services will be needed to achieve these goals. VR services are provided on an individual basis according to the person's goals and needs.

Also, the Department of Vocational Rehabilitation is generally the best place to go for information about higher education and its financing. In some cases, higher education may be financed in part or in full by VR or by other agencies to which VR can refer the prospective student.

Higher Education

Disabled student services programs (DSSPs) work to ensure that institutions of higher learning (colleges and universities) are in compliance with Section 504 of the 1973 Rehabilitation Act, which states that no student may be denied access to programs due to disability.

All institutions that receive federal funds are required to comply with this law. DSSPs also serve as a liaison between students, faculty and the administration, and advocate on the students' behalf to ensure that equal opportunity is provided to them. (See "College.")

National Library Service for the Blind and Physically Handicapped (NLS)

In cooperation with a network of regional and subregional libraries, NLS administers a free library program for residents of the United States who are unable to use standard print materials because of visual or physical disabilities.

Through NLS, recorded or Braille books and magazines are delivered by postage-free mail to those who are eligible and are returned to participating libraries in the same manner. Playback equipment, including a remote-control unit for those with limited mobility, is also available for loan for as long as recorded materials are being borrowed through NLS.

Individuals interested in applying for the service can contact the nearest NLS regional or subregional libraries, a list of which can be obtained by writing to NLS.

Housing-Related Loans

If you need to make physical adaptations to your home because of a disability, you may be eligible for a Title I Home Improvement Loan insured by the U.S. Department of Housing and Urban Development (HUD). The loan can be used to remove architectural barriers, hazards or inconvenient features in your home.

Tax Considerations

Many medical expenses, from doctor visits to X-rays to home care to the cost of purchasing a wheelchair, may be taken as tax deductions. In some respects, the IRS is more generous than many insurance companies in determining what medical expenses are legitimate. (IRS Publication 502 will tell you which expenses you can deduct and which you can't.)

You must use form 1040, Schedule A, and itemize your expenses in order to deduct. Your total medical care expenses must exceed 7.5 percent of your adjusted gross income before you can benefit from deductions.

In addition to deductions, families that have members with disabilities may, under certain circumstances, receive a tax credit for dependent care expenses (see IRS Publication 503) or qualify for the Credit for the Elderly or Disabled (see IRS Publication 524). Consult your accountant or tax preparation specialist for details.

Family and Medical Leave

If you're holding down a job while caring for a child with a disability, you should be aware that, under the Family and Medical Leave Act of 1993, an individual may be entitled to take up to 12 weeks of yearly unpaid leave without fear of losing his or her job. (Eligibility may depend on factors such as how large the business is and how long you've worked for it.)

In addition, people with disabilities who work are themselves entitled to take time off from work under this law. If they have group health coverage through work, the employer is obligated to maintain the coverage while they're on leave.

In some cases, the employee who's taking leave must provide 30 days advance notice when the leave is foreseeable, and an employer may require medical certification to support a request for leave due to a serious health condition.

Other recent legislation makes it possible for people to keep their health insurance even if they leave their jobs.

Other Programs

In addition to Vocational Rehabilitation, there is the Supported Employment Program, which works with individuals with severe disabilities who require ongoing support services to enter or maintain competitive employment.

If you think you're in need of legal help to protect your child's rights, you should be aware of the Protection & Advocacy System (P&A) and the Client Assistance Program (CAP), which are mandated by the federal government and administered by the states to help protect the rights of people with disabilities. Ask your MDA health care service coordinator about these programs and how you can contact the nearest P&A or CAP office. You can also contact the National Association of Protection and Advocacy Systems Inc.

Care Alternatives

It's an absolute must for any child that he be raised in a family environment that is supportive and caring.

However, in the event of the death or incapacitation of either or both parents of a child with a disability, there are other options to ensure the continued care of the child.

One such option is specialized foster care, which would allow the child to be cared for by a willing family for a temporary or ongoing period. Also, there are many adoptive families that are able to care for children with severe disabilities.

There are also residential centers for young people with severe disabilities. Inquire at hospitals and rehabilitation centers. Also, although they aren't easy to find, there are some nursing homes that are geared toward children.

However, placing a child in any non-family, institutional setting would be a last resort, only to be considered when there are no family members able to care for the child and all other community services have been exhausted.

Next... CHAPTER 10: Saying Good-Bye