Independent living is the issue which children with Hunter syndrome face in adolescence. The growing need to be psychologically and physically independent from parents faces several serious obstacles. First, people with Hunter syndrome are mentally retarded. Second, Hunter syndrome usually causes deafness. Third, such people also display speech problems. Hunter syndrome creates a wall of misunderstanding between an adolescent and the rest of the society. Socialization with others seems an unachievable dream.
In this context, do people with Hunter syndrome have a chance for independent living? Speaking about independent living for those with Hunter syndrome, special attention should be paid to the issues of mental retardation and the way mental retardation impacts the chances to have a happy and full independent life. The fact is that the problems of deafness and speech impairment are relatively easily resolved with the help of modern technological devices. In its turn, mental retardation causes serious stigmatization challenges in contemporary society.
For adolescents with Hunter syndrome, mental retardation is the central element of their independent living, which determines whether a person will have opportunities for self-realization. Historically, the majority of mentally retarded children did not have access to any private or public facilities, which would serve their handicapped needs (Frieden & Richards, 1999). The growing attention to Hunter syndrome has created more favorable conditions for giving such people a chance for full life. People with mild forms of Hunter syndrome have several options / opportunities in their striving towards living independently.
To start with, communities usually possess well-developed residential facilities for people with mental retardation and physical disabilities. “Community residential facilities differ widely from one another, ranging from ‘mini-institutions’ to very informally supervised houses, and a wide range of group homes” (Hanley-Maxwell, 2003). Mini-institutions and group homes represent an extremely interesting residential solution, in which people with Hunter syndrome and other physical and mental disabilities live in groups, support each other, and have more opportunities for socializing with the rest of society.
Here, a person with Hunter syndrome will need basic living skills, which he can learn from parents. In many cases, those with Hunter syndrome will face an obstacle of adapting to the new environment, and to the societal attitudes towards mentally retarded people. Simultaneously, this type of independent living is available to those with mild forms of Hunter syndrome and mental retardation (Hanley-Maxwell, 2003). Severe forms require different approaches, but do not deprive the person of an opportunity to be more independent.
Hunter syndrome is the genetic disorder which impacts all normal functions of organism, including mental health, speech, and communication. “Mentally retarded persons may appear to be so different from physically disabled persons that mixing the two groups would appear to be absurd” (Gold, 2002). Yet, there is nothing absurd in the Hunter syndrome which mixes the two different symptoms in one disease, and in one person, and which complicates the process of adolescent’s socialization. In many instances, mentally retarded children have the needs which are similar to those who are physically impaired (Edgerton, 1997).
When a person with Hunter syndrome enters independent living, his mental and physical health needs should be satisfied. “Unlike most physically disabled persons, retarded persons, by definition, have cognitive limitations that slow their progress toward greater independence” (Gold, 2002). A person with Hunter syndrome needs skills and knowledge required for independent living, but faces a difficulty in acquiring these skills due to mental health problems. Respite care is aimed at re-filling the gaps in care for Hunter syndrome adolescents and adults without separating them from their families.
Children with severe forms of Hunter syndrome are tied to their families and parents, but respite care offers an opportunity to be temporarily separated from family members with the help of other healthcare professionals (Gold, 2002). Certainly, respite care is much distanced from what we traditionally mean by “independent living”, and it does not provide children with skills necessary for independent living, but severe forms of genetic disorders usually cause severe forms of mental retardation and speech impairment, which prevent a person from conscious realization of his needs.
There are several critical factors to consider when a person with Hunter syndrome is considered for independent living. First, a person with severe forms of Hunter syndrome will hardly be eligible to independent living programs; such people are forever tied to their families or health care professionals. Second, life offers several interesting opportunities for those with mild forms of Hunter syndrome: children grow and study in special classes, learn the necessary communicational, speech, and socialization skills which they will need in their independent living.
A variety of private and public residential facilities serves the interests of mentally retarded and physically disabled people with Hunter syndrome. However, the problem is not in the skills which people with Hunter syndrome may lack; the problem is in that society is not prepared to dealing with these people. This is the most significant barrier people with Hunter syndrome face. Self-determination and not educational, training or other barriers determine the success and stability of independent living for adolescents and adults with Hunter syndrome. Conclusion
Children with mild forms of Hunter syndrome have full access to independent living with the help of various residential programs, facilities, and educational programs for physically or mentally handicapped children. Severe forms of Hunter syndrome forever tie a child to his family or healthcare professionals. In independent living, patients with Hunter syndrome face a problem of self-determination: society is not used to dealing with people with disabilities, this is why people with Hunter syndrome may also be offered psychological training programs, to adapt to the changing conditions of “healthy” society.
References
Edgerton, R. B. (1997). Stigma in the lives of mentally retarded: Hunter and Down syndromes. Berkeley: California University Press. Frieden, L. & Richards, L. (1999). A glossary of independent living. The Institute of Rehabilitation and Research. Gold, M. W. (2002). Stimulus factors in skill training of retarded adolescents with Hunter syndrome. American Journal of Mental Deficiency, 96, pp. 517-526. Hanley-Maxwell, C. (2003). Hunter syndrome: facilitations and constraints for community integration. Baltimore: Paul H. Brooks.