Intellectual disability is a challenging topic. We specialize in working with intellectually disabled men, women, and children.
This material is organized into three sections:
The term "disability" summarizes a great number of different functional limitations occurring in any population in any country of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions, or mental illness. Such impairments, conditions or illnesses may be permanent or transitory in nature.¹
The term "handicap" means the loss or limitation of opportunities to take part in the life of the community on an equal level with others. It describes the encounter between the person with a disability and the environment. The purpose of this term is to emphasize the focus on the shortcomings in the environment and in many organized activities in society, for example, information, communication and education, which prevent persons with disabilities from participating on equal terms.²
¹,² http://www.dpa.org.sg/definition_disability.htm, accessed 1/16/2008.
"Disability" is a medical and diagnostic definition. "Handicap" is a social and environmental definition that acknowledges the presence of social attitudes about disabled people, which also often prevent disabled people from participating on equal terms.
Attitudes about disabled people are shifting toward addressing both individual needs (such as rehabilitation, technical aids, treatment) and the shortcomings of the society (such as various attitudinal or physical barriers to full participation in the community).
Chapter 978, Section 1.03(922) of that New York State Mental Hygiene Law states that eligibility for New York State OMRDD (Office of Mental Retardation and intellectual Disability) services is determined by this definition.
Intellectual disability means a disability of a person which:
- is attributable to mental retardation, cerebral palsy, epilepsy, neurological impairment, or autism;
- is attributable to any other condition of person found to be closely related to mental retardation because such condition results in similar impairment of general intellectual functioning or adaptive behavior to that of mentally retarded persons or requires treatment and services similar to those required for such persons; or
- originates before the person attains age 22;
- has continued or can be expected to continue indefinitely;
- constitutes a substantial handicap to such person's ability to function normally in society.
The most current definition provided by the AAIDD (American Association on Intellectual and Developmental Disabilities) is:
"Mental retardation is a disability characterized by significant limitations both in intellectual functioning and in adaptive behavior as expressed in conceptual, social, and practical adaptive skills. This disability originates before the age of 18. A complete and accurate understanding of mental retardation involves realizing that mental retardation refers to a particular state of functioning that begins in childhood, has many dimensions, and is affected positively by individualized supports. As a model of functioning, it includes the contexts and environment within which the person functions and interacts and requires a multidimensional and ecological approach that reflects the interaction of the individual with the environment, and the outcomes of that interaction with regards to independence, relationships, societal contributions, participation in school and community, and personal well being.
This disability originates before age 18.
The following five assumptions are essential to the application of the second definition above:
- Limitations in present functioning must be considered within the context of community environments typical of the individual's age peers and culture.
- Valid assessment considers cultural and linguistic diversity as well as differences in communication, sensory, motor, and behavioral factors.
- Within an individual, limitations often co-exist with strengths.
- An important purpose of describing limitations is to develop a profile of needed supports.
- With appropriate personalized supports over a sustained period, the life functioning of the person with mental retardation generally will improve.
It is important to realize that:
- Mental retardation is not something you have, like blue eyes, or a bad heart. Nor is it something you are, like short, or thin.
- It is not a medical disorder, nor a mental disorder.
- Mental retardation is a particular state of functioning that begins in childhood and is characterized by limitation in both intelligence and adaptive skills.
- Mental retardation reflects the "fit" between the capabilities of individuals and the structure and expectations of their environment."³
³ http://www.aaidd.org/Policies/faq_mental_retardation.shtml, accessed 5/18/2007.
It is also important to know that:
Cerebral palsy is a group of dysfunctions characterized by difficulty in muscular control and sensory functions, affecting mobility (in most cases) and speech and hand movements.
Autism is a condition usually characterized by severe disorders in learning and behavior that begins in early childhood and has a marked effect on informational learning, intellectual rate and sequences, responses to environmental events, communication, and interpersonal relations.
Among people with autism, about 80% have some degree of mental retardation, often severe or profound in degree. The rate of physical conditions among people with autism is strikingly low compared to other sub-groups; the comparatively high degree of independence in self-care is also noteworthy, and similar to that found for school-age children.
Epilepsy subsumes a number of brain-centered nervous system disorders characterized by sudden seizures, muscle convulsions, and partial or total loss of consciousness due to abnormal patterns of electrical charges of brain cells.
Neurological impairments encompass a diverse group of conditions, all of which relate in some way to some form of central nervous system dysfunction. Included in the definition are conditions such as neurologically-based specific learning disabilities and minimal brain dysfunctions, as well as specific conditions such as spina bifida, Tourette's syndrome, neurofibromatosis, Prader-Willi Syndrome, and sensory impairments.
Learning disabilities comprise a disorder in one or more of the basic psychological processes involved in learning to read, write, spell, or perform mathematical tasks, and/or comprehending or expressing written or spoken language. Disorders in this category include dyslexia, intellectual aphasia, perpetual handicaps, and minimal brain dysfunction. Characteristics may include impulsivity, emotional outbursts not appropriate to the situation, short or erratic attention span, poor written or verbal skills, or difficulty recognizing communication cues, such as facial expressions and body language.
Traumatic head injury often causes aphasia, which is difficulty with speaking, reading, writing, arithmetic, spelling, counting, telling time, understanding what is said, recognizing objects, seizures, or paraplegia. Behaviorial characteristics include eccentricity, disinhibition, depression, inability to cope, and agitation. Cognitive symptoms include deficits of perception, attention, judgement, short- or long-term memory, and decreased capacity for abstract thinking. Alcohol or drug abuse is especially critical among this population because such abuse can significantly
Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE) refer to a group of physical and mental birth defects resulting from a woman's drinking alcohol during pregnancy. FAS is the leading known cause of mental retardation. Other symptoms can include organ dysfunction, growth deficiencies before and after birth, central nervous dysfunction resulting in learning disabilities, and lower IQ, and physical malformities in the face and cranial areas. In addition, children may experience behavioral and mental problems which progress into adulthood.
FAE is a lesser set of the same symptoms that make up FAS. Babies affected by alcohol can have any or all of these symptoms. FAS and FAE are widely under-diagnosed. Some experts believe that between 1/3 and 2/3 of all special education children have been irreversibly affected by alcohol in some way.
At least 5,000 infants are born each year with FAS; another 50,000 show symptoms of FAE.
No amount of alcohol consumption during pregnancy is known to be safe. FAS and FAE can be prevented by a woman's not drinking alcohol while she is pregnant.
We constantly strive to know people whom we work with by spending a lot of time with them to develop individual relationships with everyone whom we serve. Our direct care staff are truly phenomenal. They know our consumers' favorite colors, clothes, strongly disliked foods, and many sother similar items that one only knows after living and interacting closely with people every day.
Two other ways that we work with intellectually disabled people are advocacy and counseling. Advocacy means expressing needs and wants with and for people who otherwise might have difficulty doing so by themselves for various reasons, such as mental capacity, communication abilities, or that no one has listened to them in the past.
Counseling is when one person helps another person think and express themselves about their past and present life, and about what they can and want to do in their present and future lives.
Working, advocating, and counseling together with intellectually disabled people absolutely requires that we develop personal relationships with them, which we constantly do every day.
Yes. Please visit www.mountainlakeservices.org/privacy_policy.html.
An ISP is completed for all the people to whom we provide services. All our consumers have ISPs.
It is the consumer's roadmap to his or her destination. It's like a contract, an agreement, and not a clinical assessment or a summary of clinical assessments and recommendations.
It's an ever-changing personal life plan. It describes the consumer's current needs and choices, and it can plan ahead for the future. The ISP is not meant to be a report or summary of what happened in the past 6 months or year.
It's a working tool to make things happen, and it should not get in the way of a person's valued outcomes. People want a life, not just a plan.
The person's valued outcomes are clear and consistent throughout the plan. The ISP is person-center, not system-centered. Strengths, interests, preferences, challenges, etc. are noted. The ISP stresses inclusion and valued social roles in the community. The ISP uses natural supports and community resources to the extent possible. The ISP includes safeguards that promote health and safety. The ISP is always current and effective, to make things happen. The ISP's strength is informed choice and consumer satisfaction. ISP development is collaborative between the consumer and the advocate, family, and service providers, et al. The ISP creates a clear vision of a positive and desirable future. The ISP reflects the big picture of a person's life.
Another way of looking at an ISP is that it should always provide for three consumer-valued outcomes:
"Person-centered planning is a process of learning how a person wants to live and then describing what needs to be done to help that person move toward that life. It is a description of where the person wants his/her life to go and what needs to be done (and what needs to be maintained) to get there. Good plans are rooted in what is important to the person while taking into account all of the other factors that impact on the person's life." -- Michael W. Small, University of Maryland
Our definition of "person-centered" means looking at a disabled person as the center of a process that:
We work hard to get to know everyone and to develop relationships with these people based on trust, commitment, and communication. We regularly ask for their advice and input. These people are always part of the ISP meetings and planning.
Again, we work hard to get to know people and to develop relationships with people in the community. We don't strive merely for presence and inclusion, which are more or less "being there." We strive and advocate for intellectually disabled people having "valued roles," which means active participation, such as involvement in the Chamber of Commerce, the fire department, helping local businesses, seeking employment, etc.
The Internet offers many resources about intellectual disabilities, mental retardation, and related topics. We encourage you to use this brief list for your own exploration of these subjects.
Note: All these links open in new windows. All were accessed 1/16/2008.
The ARC of the United States is a national organization focusing upon children and adults with cognitive, intellectual, and intellectual disabilities throughout the United States. The ARC focuses upon developing and improving numerous supports and services for intellectually disabled people and their families. Numerous research and education efforts are aimed toward preventing mental retardation in infants and young children. Advocacy at the national level is another of the ARC's primary efforts.
New York State ARC (NYSARC), Inc., our state-wide umbrella organization, maintains two areas of particular interest to New York State residents: News & Current Trends, and Legislative Issues.
New York State Association of Community & Residential Agencies (NYSACRA) provides services, advocacy, information, technical assistance, education and collaboration and networking experiences to its members, who typically have an interest or involvement in a viable service environment that offers quality community living opportunities and supports to people with intellectual disabilities and their families. Their primary focus is advocacy for improving public policy in these areas. The site offers discussion forums, publications downloads, and links to other websites.
New York State Rehabilitation Association, Inc. (NYSRA) offers action, analyis, and advocacy "...on behalf of people with differing abilities." They offer a calendar, links to pertinent NY State websites, public policy position papers, and various other topics.
New York State Industries for the Disabled, Inc. (NYSID) is an organization for "...meeting the purchasing needs of state and local government agencies while advancing employment for New Yorkers with disabilities. Under the New York State Preferred Source Program, NYSID acts as a 'virtual storefront' for a statewide network of 135 community rehabilitation agencies that employ skilled people with disabilities in both facility-based settings and community-based jobs. Through more than 850 contracts that bring work to NY State communities, NYSID member agencies deliver quality goods and services at OGS-approved prices to fulfill individual government agency missions. "
The ARCLink is a national clearinghouse of information about services to people with intellectual disabilities. Of particular interest is their "Know the System" section, an explanation of the Federal system of service provision to people with intellectual disabilities.
The American Association on on Intellectual and Developmental Disabilities (AAIDD) promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities. AAMR offers books, articles, journals, etc. Their FAQ Sheet explains in more detail many topics related to mental retardation, such as supports for intellectually disabled and mentally retarded people, adaptive behavior, etc., and leads to other AAIDD fact sheets about specific sub-topics of mental retardation (e.g. aging, self-advocacy, human rights, supported employment).
N.B. AAIDD was formerly known as AAMR, American Association on Mental Retardation.
disABILITY Information and Resources is a site created and maintained solely by Jim Lubin, who is a C2 quadriplegic, completely paralyzed from the neck down and dependent on a ventilator to breathe. He provides an extensive list of links to Internet resources.
The Disability Link Barn is provided by Access Unlimited, a manufacturer and distributor of adaptive transportation and mobility equipment for people with disabilities.
Disability Resources is a large, frequently-updated site with links to many disability-related topics.
The Internet Public Library -- Disabilities section provides an eclectic list of links to subjects, magazines, and associations pertaining to people with disabilities.
Ragged Edge Magazine covers many aspects of disability rights activism, activity, and opinions. It was originally known as Disability Rag during the 1980's and 1990's.
Advocado Press, affiliated with Ragged Edge Magazine, offers books about many different forms and perceptions of disability. Book reviews are included on the site.
The Center for an Accessible Society provides extensive disability issues information. It is primarily for journalists, but it's good for everyone. It is a communications clearinghouse of credible information and quotable sources on national disability policy and independent living issues, with a broad national viewpoint. You don't have to to be a newspaper writer to learn more about all these topics, smile!
Special Education Resources on the Internet (SERI) is a collection of Internet accessible information resources of interest to those involved in the fields related to Special Education. The collection exists to make online special education resources more easily and readily available in one location.
Exceptional Parent, a magazine for parents raising disabled children, offers an online resource, with information, support, ideas, encouragement & outreach for parents and families of children with disabilities, and the professionals who work with them. Exceptional Parent covers healthcare, education, life planning, technology, financial planning, mobility, and sports. For example, they have a Financial Planning Series that gives families the knowledge and the tools they need to plan for the future of a child with a disability, by taking them through a comprehensive planning process.
Parent to Parent of New York State connects parents of disabled chilren who live in New York State with a trained volunteer support parent whose child has the same disability, illness, issue, or concern to provide support and share information. They can also connect families with local, state, or national resources and organizations. They also recognize and encourage agencies and government to work together in partnership with local groups and associations, stating that strength is gained when each affirms and values the others' strengths and talents.
The Sibling Support Project is a program of the national ARC, dedicated to the interests of brothers and sisters of people with special health and intellectual needs. Believing that disabilities, illness, and mental health issues affect the lives of all family members, this project works to increase the peer support and information opportunities for brothers and sisters of intellectually disabled children, and to increase parents' and providers' understanding of siblings' issues. They train local service providers on how to create community-based peer support programs for young siblings; host workshops, listservs, and websites for young and adult siblings; and increase parents' and providers' awareness of siblings' unique, life-long, and ever-changing concerns through workshops, websites, and written materials.
ABLEDATA is a federally funded project whose primary mission is to provide information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States. The ABLEDATA database contains information on more than 30,000 assistive technology products (over 20,000 of which are currently available), from white canes to voice output programs. The database contains detailed descriptions of each product, including price and company information. The database also contains information on non-commercial prototypes, customized and one-of-a-kind products, and do-it-yourself designs. To select devices most appropriate to your needs, we suggest combining AbleData's information with professional advice, product evaluations, and hands-on product trials.
Assistive Tech is a resource for assistive technology (AT) and a link to a wide variety of AT and disability-related information. Their searchable database of AT is designed to help you target solutions, determine costs and link to vendors that sell products. They call themselves "your global assistive technology explorer."
Tech Connections is another one-stop resource for information on assistive technology designed to accommodate people with disabilities in the workplace and in everyday life activities.
