Lifetime Planning For Families with Special Needs

For nearly 30 years, through Special Olympics, Oregonians with mental disabilities have enriched their lives, improved their health and made new friendships. Special Olympics is recognized as an organization that excels at enhancing the overall quality of life for all individuals who participate. They are Training for Life.

In conjunction with that theme, Oregon Special Olympics and the Northwest Center for Special Needs Planning are teaming up to ensure that the future quality of life of our friends and loved ones with disabilities is never left to chance. This column is being contributed by the NW Center as a regular feature of the Excel. The focus of each edition will be to provide education and practical information families can apply to planning for the future.

Quality of life is difficult to assure, so families MUST plan for it. Despite advances in medical knowledge and technology, thousands of babies are born each year with mental retardation and other developmental disabilities. Because of medical advancement, most people with special needs are able to achieve full life expectancy. Therefore, the need to anticipate and project the primary daily living requirements, lifelong financial requirements and legal issues, for the individual's life expectancy, is essential to ensuring a high quality of life.

Because parents will be growing old with their special needs child, families need to plan for beyond childhood, beyond middle age and into old age. With increased life expectancy comes the likelihood that many of the same conditions associated with "old age" in persons of the general population, may develop in the parents as well as their child, such as arthritis, osteoporosis, heart disease, visual impairment, Alzheimer's disease, etc. Further, those conditions may develop earlier and manifest more dramatically in a person with mental retardation or other developmental disability.

Consider this example. Down syndrome is the leading cause of mental retardation in the United States. Formerly, individuals with Down typically had shorter life expectancies than others whose mental retardation resulted from other causes. To date, the oldest documented individual with Down syndrome is 84 years of age, however, the majority can expect to live well into their 60's and 70's. Further, recent studies show that individuals with Down have a high risk of acquiring Alzheimer's disease. Best estimates suggest that 40-45% of those individuals in the 50-70 year age range will develop Alzheimer's.

Without a doubt, parents of children with special needs are faced with a lifetime of challenges. One of the most important challenges is planning for a child's continued care after the parents can no longer provide it. Many parents worry that their child's welfare will suffer when they are ultimately "on their own" or under the care of a guardian. And yet, while that makes it all the more important that careful plans be made for the child, parents facing a myriad of daily challenges and stresses often find it difficult to give such planning the proper time and attention it requires.

It is estimated that fewer than one third of the parents of children who have special needs make plans for the continued care of their children. As a result, the standard of care and quality of life for these individuals will potentially deteriorate as they get older. Sometimes, if the parents do make arrangements for continued care, the plans are not as carefully implemented as they should be. The consequence is that their child's benefits from inheritances, social programs or other sources may be jeopardized. The failure to plan at all can have disastrous consequences. The only way parents can be sure that their child with special needs will continue to receive loving and sensitive care throughout their lifetimes is to develop a strategy to implement a carefully drawn comprehensive lifetime plan.