Long-Term Care Issues for People with Pervasive Developmental Disorders
Susan Lesco
IMPORTANCE OF TOPIC
Each year, approximately 500,000 Americans are diagnosed with an Autism Spectrum Disorder. (CDC 2005) (p.1) The Autism Society of America states, "Based on statistics from the U.S. Department of Education and other governmental agencies, autism is growing at a startling rate of 10-17 percent per year. At this rate, the ASA estimates that the prevalence of autism could reach 4 million Americans in the next decade." (ASA n.d.) "Previously autism was thought to be a rare condition, but the number of children receiving services for an ASD has increased dramatically in the last decade. Concerns about increases in DDs, particularly ASDs, their causes, and the high costs of intervention have highlighted the need for systematic public health monitoring." (Rice, Schendel , Cunniff , Doernberg 2004)
The term Autism Spectrum Disorders refers to a group of five Pervasive Developmental Disorders including Autistic Disorder, Asperger's Syndrome, Rett's Disorder, Childhood Disintegrative Disorder and Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS). (DSM-IV-TR) Although there are numerous symptoms, people with ASDs commonly share core deficits in language, cognition and social skills. (Baron-Cohen, et. al. , Gillberg, Greenspan, Minshew, Tanguay, Zimmerman, Gordon, 2001).
The Federal Forum on Childhood and Family Statistics' report entitled "America's Children: Key National Indicators of Well-Being 2005," states that "In 2003, 5 percent of children ages 4-17 were reported by a parent to have definite or severe difficulties with emotions, concentration, behavior, or being able to get along with other people. Sixty-five percent of the parents of these children reported contacting a mental health professional or general doctor and/or that the child received special education for these difficulties." (Forum on Childhood and Family Statistics 2005) Both children and adults with ASDs, whose functional skills are significantly compromised, often require long-term, assistance to live with the highest attainable quality of life, in the least restrictive environment possible. Unfortunately, as reported by the American Civil Liberties Union Disability Rights Position/Briefing Paper of January 1, 1999, "People with disabilities are the poorest, least employed, and least educated minority in America.." (ACLU)
AVAILABLE RECOURCES
The programs and life sustaining long-term care services that are currently available for this population include, but are not limited to, job coaching, educational modifications, residential habilitation counseling, day programs, respite and other related supports, primarily provided by the Office of Mental Retardation and Developmental Disabilities. These services are paid for by full-coverage long term care Medicaid and Medicaid Waivers. In order to meet the eligibility criteria for OMRDD services, a person must have a medically documented developmental disability with onset prior to the age of 22, and a full scale I.Q. of 60 or below. A developmentally disabled person with a full scale I.Q. above 60 (such as someone with Cerebral Palsy or Asperger's Syndrome), must have documented adaptive skills deficits that substantially interfere in his/her daily functioning. Consumers must also be eligible for long-term care Mediciad, which means living within the federal poverety level. (OMRDD-LIDDSO 2006)
People with disorders severe enough to require services provided by the Office of Mental Retardation and Developmental Disabilities (OMRDD) often rely on Supplemental Security Income, long-term care Medicaid funded programs and waivers, the generosity of family and friends, and the help of social service agencies, to live and function in the least restrictive environment possible. Particularly in high cost of living areas (i.e. Long Island), people with ASDs face a lifetime of poverty and uncertainty. The New York State OMRDD reports that 749,137 New Yorkers were elegible for services in 2003. (Five Year Comprehensive Plan for the years 2005 - 2010) Current statistics provided by the New York State Department of Health and Human Services show that as of June 9, 2005, 4,233,958 people in New York State are eligible for Medicaid and 669,208 disabled, blind and aged New Yorkers are eligible for Supplemental Security Income. (NY State Department of Health)
SUGGESTIONS TO CORRECT DISPARITIES
Hundreds of thousands of people with ASDs are now facing potentially devastating cuts in their entitlements. According to a preliminary report on Medicaid reform, issued by the National Governors Association on June 15, 2005, the federal government is seeking ways of "slowing the growth of Medicaid long-term care." The report states, "While Medicaid reforms over the past twenty years have focused on improving the long-term care benefit (eliminating the institutional bias, encouraging consumer-directed care, etc), new efforts need to focus on how to encourage personal responsibility and discourage the reliance on Medicaid financed long-term care." (The National Governors Association)
The rapidly increasing populations of people with ASDs are facing rapidly decreasing opportunities to access services. If we are going to "discourage the reliance on Medicaid financed long-term care," we must provide alternative financing for these essential services. One suggestion for people with ASDs is to create a separate government agency specifically for this growing population. The agency could collaborate with the numerous national organizations that are already in existence to identify the most effective services and develop a mechanism to fund them. According to an email circulated on Friday, February 17, 2006, by New York State Department of Health Project Director Robert Sherman, "The NYS Department of Health (DOH) has been developing a Long Term Care Restructuring Initiative intended to redesign the way that long term care services are provided in New York State." The DOH is seeking individuals or entities interested in attending regional sessions to provide input into the restructuring process. This is a start.
REFERENCES
ACLU Briefing Paper #21 on Disability Rights (1999) (n.d.), Retrieved November 1, 2005 and February 17, 2006, from the American Civil Liberties Union Web site: http://www.aclu.org/disability/gen/10640res20020228.html?ht=
American Psychiatric Association (2000) Text Revision of the Diagnostic and Statistical Manual Fourth Edition DSM-IV-TR.
Autism Society of America, the Voice of Autism (n.d.), About PDD, Retrieved February 17, 2006, from the ASA Web Site.
http://www.autism-society.org/site/PageServer?pagename=WhatisAutism
Baron-Cohen, S. et. al. , Gillberg, C., Greenspan, S. Minshew, N., Tanguay, P. , Zimmerman, A. Gordon, G., (2001). The Core Deficits of Autism and Disorders of Relating and Communicating. The Journal of Developmental and Learning Disorders Special Edition volume 5 number 1 (6) Retrieved February 17, 2006, http://icdl.com/icdld/2001_v5_1_.pdf
Centers for Disease Control and Prevention, How Common is Autism Spectrum Disorder (2005), Retrieved February 17, 2006, from the Department of Health and Human Services Web site: http://www.cdc.gov/ncbddd/autism/asd_common.htm
Federal Forum on Childhood and Family Statistics, America's Children: Key National Indicators of Well-Being 2005, (2005) Retrieved February 17, 2006, http://childstats.gov/americaschildren/index.asp
Five Year Comprehensive Plan for the years 2005 - 2010, (n.d.) Table 1. 2003 Prevalence estimates (conditions) for categorical developmental disabilities as defined in the New York State Mental Hygiene Law, (n.d.) Retrieved November 1, 2005 and February 17, 2006 from: http://www.omr.state.ny.us/507plan/hp_507_plan.jsp
Medicaid Reform A Preliminary Report from The National Governors Association (2005) p. 12 4 (n.d.), Retrieved November 1, 2005 and February 17, 2006, from the National Governors Association Web site: http://www.nga.org/portal/site/nga/menuitem.b14a675ba7f89cf9e8ebb856a11010a0 and http://www.nga.org/Files/pdf/0506medicaid.pdf
New York State Department of Health, Monthly Medicaid Eligibility Reports (2005), (n.d.) Retrieved November 1, 2005 and February 17, 2006, from the Department of Health Information for a Health New York Web site: http://www.health.state.ny.us/nysdoh/medstat/el2005/mo_05_el.htm and http://www.health.state.ny.us/nysdoh/medstat/el2005/jun_05_el.xls
New York State Office of Mental Retardation and Developmental Disabilities, Long Island Developmental Disabilities Services Office, Intake and Eligibility Department (2006). Phone Number (631) 434-6100
Rice C, Schendel D, Cunniff C, Doernberg N. Am J Med Genet C Semin Med Genet. 2004 Feb 15;125(1):22-7. Review. PMID: 14755430 [PubMed - indexed for MEDLINE] Public health monitoring of developmental disabilities with a focus on the autism spectrum disorders. Retrieved February 17, 2006, http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&
list_uids=14755430&dopt=Abstract
Sherman, R. (2006) Long Term Care Restructuring Initiative, NYS Department of Health, Received Email February 17, 2006 Forwarded by Kerry A. Wiley, Program Research Specialist, New York State Developmental Disabilities Planning Council, kwiley@ddpc.state.ny.us Respond to Cynthia Jones cxj09@health.state.ny.us
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