Running head: CARING FOR THE MENTALLY RETARDED 1

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1 Running head: CARING FOR THE MENTALLY RETARDED 1 Caring for the Mentally Retarded Alison Antonelli Penn State University

2 CARING FOR THE MENTALLY RETARDED 2 Introduction The care of and the resources for the mentally retarded are important issues because these peoples disabilities last throughout their lives. People with mental retardation and other severe disabilities use the most health care services of any other group, and these services are profoundly expensive because of their long-term nature (Forducey, Glueckauf, Bergquist, Maheu, & Yutsis, 2012). Adults with mental retardation rely heavily on not only the medical services that they receive, but also majorly on their parents as their primary caregivers. This group is of specific importance because as the disabled age, their needs become different. At the same time, the parent caregivers are also aging and may start to rely more on other people for help. Our policy making must address these issues if healthcare is a main concern, because institutionalizing the disabled after their caregivers pass will only increase the amount of money that is spent on care. Mental Retardation Diagnosis and Care Mental retardation can come in many forms. Down Syndrome and Cerebral Palsy are just two examples of diagnosed forms of mental retardation; however, the human services view of helping people with mental retardation relies more on classification than medical diagnosis. These three classifications of mental retardation are mild, moderate, severe, and profound (Burger, 2011.) In a specific sense, these classifications are based upon the testing and results of a person s IQ. Burger (2011) defines any IQ range under 70 as mentally retarded, with the lower numbers belonging to more severely retarded persons. Although IQ numbers are helpful with a general idea of how severely retarded people may be, everyday functionality and how they can

3 CARING FOR THE MENTALLY RETARDED 3 adapt to life gives caregivers and doctors a better idea of what help the disabled people will need throughout their lives. Medicaid Personal Care Service (PCS) is one of the most largely used resources available to mentally retarded persons (Patnaik et al., 2011). The care that this agency provides is designed to help disabled people live within their communities and become involved as much as possible in the decisions regarding their care. Although there are many institutions that can provide constant care for these people, PCS focuses on home care which is not only an emotionally positive thing for families of the mentally retarded, but it cuts the cost of long term institutional care that these families are burdened with (Patnaik et al., 2011). The support that PCS gives to the mentally retarded and their families focuses on everyday living. Feeding, dressing, bathing, administering medications, and educating caregivers and the patient about care are some examples of the help they provide. Although these types of help are essential, not all families are fortunate enough to receive this help. Public Care Issues Although the aid that PCS and other similar agencies provide is important in the health and well-being of the mentally retarded, many families find it a difficult and confusing process to determine how much aid they are eligible for. Usually the severity of the disability of a person is determined by a doctor or other medical professional based on diagnosis. Many human service agencies that advocate for the disabled and their families disagree with this approach and hold the view that the amount of aid or care someone receives should be based on how they are able to function on a basic level, how able their caregiver is to care for them properly, and how their environment restricts or permits their function (Patnaik et al., 2011). These opposing viewpoints

4 CARING FOR THE MENTALLY RETARDED 4 resulted in a general agreement between human service workers and medical professionals that there needs to be a better analyzing technique created in order to determine the amount of help a person and his or her family receives from PCS (Patnaik et al., 2011.) Along with this conclusion, many human service workers agree that a main contributing factor to the amount of care that one should receive is the amount of self-care that a person is able to do. It makes sense that a profoundly retarded person will have less ability for self-care than a mildly retarded person will have. The issue with this is that when doctors make a prognosis for self-care, it is usually when a mentally retarded person is still very young, and their abilities may change over time. Therefore, self-care predicting factors must be researched more in order to fully help a person and know how their needs may change over time (Phipps & Roberts, 2012). Changing Care The Community First Choice Program provides monetary incentives for Medicaid to provide home care to disabled persons (Patnaik et al., 2012). This incentive is a reflection of the change in medical and human service direction, because past views of care for the mentally retarded were more institution-based instead of home-based. With expenses for any type of medical service rising and the extreme debt that many families have due to the long term care that the mentally retarded person must receive, professionals are now focusing on making caregivers more proactive by encouraging family participation through education instead of relying so heavily on medical personnel (Forducey et al., 2012). A common way that healthcare providers and human service workers are encouraging this family participation is through the Therapeutic Alliance, which is defined by Forducey et al. (2012) as a collaboration among caregivers, medical providers, and patients. This approach is a positive step because all are involved in the care and feel empowered by helping make decisions. It is also a huge benefit to

5 CARING FOR THE MENTALLY RETARDED 5 the family because they are cutting medical expenses by performing tasks that would have previously been performed by a professional but are not necessarily vital to be performed by a professional. Another positive aspect of the Therapeutic Alliance is that caregivers, especially parents of adult children who are mentally retarded, feel more emotionally involved. The fact that mentally disabled persons can be social supports for parents who are caring for them is often overlooked in the social sciences, and social support is vital in caregiver well-being (Greenberg, Seltzer, Krauss, Chou, & Hong, 2006). Studies have shown, however, that parents who have a strong emotional connection with their disabled children are able to better care for them and deal with the stresses involved in being a caregivers of mentally retarded children. Another important factor relating to emotional involvement is the idea of dispositional optimism. Greenberg et al. (2006) defines this as a general positive outlook on the future. This is important for caregivers, because if they are optimistic about their mentally disabled children, they will be more open to emotional involvement of the caregiver role, which in turn, creates more positive and nurturing environments for the mentally retarded children. Discussion Mental retardation is a complicated group that is in need of help. There are various ways of diagnosing people with mental retardation and various approaches to caring for those people, and unlike acute diseases or disorders, mental retardation is lifelong and often requires special care from birth to death. This long-term care is not only expensive, it is stressful for caregivers, time consuming, and often difficult because of the changing needs of the disabled people as they grow.

6 CARING FOR THE MENTALLY RETARDED 6 Our society has changed over the decades by understanding that mental disability does not mean a person is not capable of learning. Public schools, private programs, businesses and other organizations all recognize that people that are classified as mentally retarded are able to be productive members of society and are now widely given that chance. Although this is a very positive thing, there is still much work that must be done on the medical side of caring for the mentally retarded. Much of this lies in the hands of policy makers who will ultimately determine whether medical care should be a private problem or a public issue. Obviously, if medical care becomes a public issue, PCS and other forms of care will become much more affordable for all and especially for those who need long term care like the mentally retarded. It seems like an easy solution to fix the problem of extreme medical expenses, but in our political world today, many people do not agree that medical issues should be a public concern. Overall, weighing the pros and cons of issues must be carefully considered in voting and policy making so that one group s choices do not negatively affect another group of people that deserve help. At the same time though, choices and policies must remain economically reasonable. This contradiction is one of the major reasons that makes giving widespread help to people so hard.

7 CARING FOR THE MENTALLY RETARDED 7 References Burger, W. R. (2011). Human services in contemporary america (8 th ed.). Belmont, CA: Brooks/Cole. Forducey, P. G., Glueckauf, R. L., Bergquist, T. F., Maheu, M. M., & Yutsis, M. (2012). Telehealth for persons with severe functional disabilities and their caregivers: Facilitating self- care management in the home setting. Psychological Services, 9(2), doi: Patnaik, A., Elliott, T. R., Moudouni, D. M., Fournier, C. J., Naiser, E., Miller, T. R.,.. Phillips, C. D. (2011). Severity of children's intellectual disabilities and medicaid personal care services. Rehabilitation Psychology, 56(4), doi: Phipps, S., & Roberts, P. (2012). Predicting the effects of cerebral palsy severity on self-care, mobility, and social function. The American Journal of Occupational Therapy, 66(4), Retrieved from account id=13158 Steven, J., & Mailick, M. (2004). The effect of quality of the relationship between mothers and adult children with schizophrenia, autism, or down syndrome on maternal well-being: The mediating role of optimism. American Journal of Orthopsychiatry, 74(1), doi: