Although there is a great deal of pressure by some government agencies and advocacy groups to eliminate programs that provide services in group or “congregate” settings, their availability should be based on the needs and preferences of the individuals involved and not on an ideology that dismisses these programs as unnecessary or harmful to people disabilities.
The establishment of ICFs/IID in the early 1980’s was a welcome reform to the scandalous conditions in many institutions at the time. For better or for worse, Michigan has eliminated public ICFs/IID, although some individuals continue to need the level of care that can only be provided in ICFs or skilled nursing facilities. The public, including families of people with the most severe and complex disabilities, are mostly unfamiliar with the terminology related to ICFs/IID. A better grasp of the definitions used in the ICF program can result in a better understanding of both the ICF program and Home and Community-Based Services, so that people with intellectual and developmental disabilities receive the services they are entitled to in the settings that work best for them.
Recently, I came across an “ICF/IID Glossary” on a Website at the Centers for Medicare and Medicaid Services (CMS) that defines the terms that often come up when considering services and living situations.
Here are some excepts from the glossary that define terms and eligibility for services and programs:
Intellectual Disability (AAIDD)(2013)**
An individual is determined to have an intellectual disability based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in adaptive skill areas; and the condition is present from childhood (defined as age 18 or less).
Intermediate Care Facility for Individuals with Intellectual Disabilities (42 CFR 435.1009)
Institution for individuals with intellectual disabilities means an institution (or distinct part of an institution) that --
1. Is primarily for the diagnosis, treatment, or rehabilitation of the intellectually disabled or persons with related conditions; and
2. Provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration of health or rehabilitative services to help each individual function at his greatest ability.
Institution (42 CFR 435.1009)
Institution means an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.
[Note: an ICF/IID can be any setting from a small group home with four residents to a larger facility that serves many people in the same location. In Medicaid law an ICF/IID is considered an institution and is funded differently than community settings such as state licensed group homes and other programs. A distinguishing characteristic of an ICF/IID is that food, shelter (housing) and treatment services are included in the cost. In community settings, funding is fragmented and all the funding streams are often not taken into account when comparing costs. For example, with my sons who live in a group home, our community mental health agency funds services in the group home but my sons pay for room and board out of their Supplemental Security Income (SSI) from the federal Social Security Administration and food is paid for separately. Cost comparisons between group homes and ICFs do not necessarily reflect these differences and end up exaggerating the costs of institutional care.]
Persons with related conditions (42 CFR 435.1009)
Here are some excepts from the glossary that define terms and eligibility for services and programs:
Intellectual Disability (AAIDD)(2013)**
An individual is determined to have an intellectual disability based on the following three criteria: intellectual functioning level (IQ) is below 70-75; significant limitations exist in adaptive skill areas; and the condition is present from childhood (defined as age 18 or less).
Intermediate Care Facility for Individuals with Intellectual Disabilities (42 CFR 435.1009)
Institution for individuals with intellectual disabilities means an institution (or distinct part of an institution) that --
1. Is primarily for the diagnosis, treatment, or rehabilitation of the intellectually disabled or persons with related conditions; and
2. Provides, in a protected residential setting, ongoing evaluation, planning, 24-hour supervision, coordination, and integration of health or rehabilitative services to help each individual function at his greatest ability.
Institution (42 CFR 435.1009)
Institution means an establishment that furnishes (in single or multiple facilities) food, shelter, and some treatment or services to four or more persons unrelated to the proprietor.
[Note: an ICF/IID can be any setting from a small group home with four residents to a larger facility that serves many people in the same location. In Medicaid law an ICF/IID is considered an institution and is funded differently than community settings such as state licensed group homes and other programs. A distinguishing characteristic of an ICF/IID is that food, shelter (housing) and treatment services are included in the cost. In community settings, funding is fragmented and all the funding streams are often not taken into account when comparing costs. For example, with my sons who live in a group home, our community mental health agency funds services in the group home but my sons pay for room and board out of their Supplemental Security Income (SSI) from the federal Social Security Administration and food is paid for separately. Cost comparisons between group homes and ICFs do not necessarily reflect these differences and end up exaggerating the costs of institutional care.]
Persons with related conditions (42 CFR 435.1009)
[This defines who is eligible for an ICF/IID and therefore eligible for HCBS.]
Persons with related conditions relates to individuals who have a severe, chronic disability that meets all of the following conditions:
(a) it is attributable to, (1)cerebral palsy or epilepsy or (2) any other condition, other than mental illness, found to be closely related to intellectual disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of intellectually disabled and requires treatment or services similar to those required for these persons, (b) it is manifested before the person reaches the age of 22, (c) it is likely to continue indefinitely (d) results in substantial functional limitations in three or more of the following areas of major life activities: (1) self care; (2) understanding and use of language; (3) learning; (4) mobility; (5) self direction; (6) capacity for independent living.
Developmental Disability(P.L. 101-496)
A severe, chronic disability of a person 5 years of age or older which:
(a) Is attributable to a mental or physical impairment or is a combination of mental and physical impairments; (b) Is manifested before the person attains age twenty-two; (c) Results in substantial functional limitations in three or more of the following areas of major life activity: (I) self care;(ii) receptive and expressed language; (iii) learning; (iv) mobility; (v) self direction; (vi) capacity for independent living; and (vii) economic self sufficiency; and (e) reflects the person's need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are lifelong or extended duration and are individually planned and coordinated; except that such term, when applied to infants and young children (meaning individuals from birth to age 5, inclusive),who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.
Persons with related conditions relates to individuals who have a severe, chronic disability that meets all of the following conditions:
(a) it is attributable to, (1)cerebral palsy or epilepsy or (2) any other condition, other than mental illness, found to be closely related to intellectual disability because this condition results in impairment of general intellectual functioning or adaptive behavior similar to that of intellectually disabled and requires treatment or services similar to those required for these persons, (b) it is manifested before the person reaches the age of 22, (c) it is likely to continue indefinitely (d) results in substantial functional limitations in three or more of the following areas of major life activities: (1) self care; (2) understanding and use of language; (3) learning; (4) mobility; (5) self direction; (6) capacity for independent living.
Developmental Disability(P.L. 101-496)
A severe, chronic disability of a person 5 years of age or older which:
(a) Is attributable to a mental or physical impairment or is a combination of mental and physical impairments; (b) Is manifested before the person attains age twenty-two; (c) Results in substantial functional limitations in three or more of the following areas of major life activity: (I) self care;(ii) receptive and expressed language; (iii) learning; (iv) mobility; (v) self direction; (vi) capacity for independent living; and (vii) economic self sufficiency; and (e) reflects the person's need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are lifelong or extended duration and are individually planned and coordinated; except that such term, when applied to infants and young children (meaning individuals from birth to age 5, inclusive),who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.
Active Treatment (42 CFR 483.440(a))
[This is one of the services that distinguish ICFs/IID from other programs, but these types of services are also available in the HCBS program as determined through the individual service plan.]
Refers to aggressive, consistent implementation of a program of specialized and generic training, treatment and health services. Active treatment does not include services to maintain generally independent clients who are able to function with little supervision or in the absence of a continuous active treatment program.
Components of Active Treatment:
A. Comprehensive Functional Assessment (CFR42 CFR 483.440(c)(3)). The individual's interdisciplinary team must produce accurate, comprehensive functional assessment data, within 30 days after admission, that identify all of the individual's:
• Specific developmental strengths, including individual preferences;
• Specific functional and adaptive social skills the individual needs to acquire;
• Presenting disabilities and when possible their causes; and
• Need for services without regard to their availability.
B. Individual Program Plan (IPP) (42 CFR 483.440(c)). The interdisciplinary team must prepare an IPP which includes opportunities for individual choice and self management and identifies: the discrete, measurable, criteria based objectives the individual is to achieve; and the specific individualized program of specialized and generic strategies, supports and techniques to be employed. The IPP must be directed toward the acquisition of the behaviors necessary for the individual to function with as much self-determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status.
C. Program Implementation (42 CFR 483.440(d)). Each individual must receive a continuous active treatment program consisting of needed interventions and services in sufficient intensity and frequency to support the achievement of IPP objectives.
D. Program Documentation (42 CFR 483.440(e)). Accurate, systematic, behaviorally stated data about the individual's performance toward meeting the criteria stated in IPP objectives serves as the basis for necessary change and revision to the program.
E. Program Monitoring and Change (42 CFR 483.440(f). At least annually, the comprehensive functional assessment of each individual is reviewed by the interdisciplinary team for its relevancy and updated, as needed. The IPP is revised as appropriate.
Community Integration (The Council)*
Refers to aggressive, consistent implementation of a program of specialized and generic training, treatment and health services. Active treatment does not include services to maintain generally independent clients who are able to function with little supervision or in the absence of a continuous active treatment program.
Components of Active Treatment:
A. Comprehensive Functional Assessment (CFR42 CFR 483.440(c)(3)). The individual's interdisciplinary team must produce accurate, comprehensive functional assessment data, within 30 days after admission, that identify all of the individual's:
• Specific developmental strengths, including individual preferences;
• Specific functional and adaptive social skills the individual needs to acquire;
• Presenting disabilities and when possible their causes; and
• Need for services without regard to their availability.
B. Individual Program Plan (IPP) (42 CFR 483.440(c)). The interdisciplinary team must prepare an IPP which includes opportunities for individual choice and self management and identifies: the discrete, measurable, criteria based objectives the individual is to achieve; and the specific individualized program of specialized and generic strategies, supports and techniques to be employed. The IPP must be directed toward the acquisition of the behaviors necessary for the individual to function with as much self-determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status.
C. Program Implementation (42 CFR 483.440(d)). Each individual must receive a continuous active treatment program consisting of needed interventions and services in sufficient intensity and frequency to support the achievement of IPP objectives.
D. Program Documentation (42 CFR 483.440(e)). Accurate, systematic, behaviorally stated data about the individual's performance toward meeting the criteria stated in IPP objectives serves as the basis for necessary change and revision to the program.
E. Program Monitoring and Change (42 CFR 483.440(f). At least annually, the comprehensive functional assessment of each individual is reviewed by the interdisciplinary team for its relevancy and updated, as needed. The IPP is revised as appropriate.
Community Integration (The Council)*
Refers to arrangements that enable individuals to live, work, learn and play side by side in the community with people who do not have disabilities.
Assessment (The Council)*
Refers to the process of identifying an individual's specific strengths, developmental needs and need for services. This should include identification of the individual's present developmental level and health status and where possible, the cause of the disability; the expressed needs and desires of the individual and his or her family; and the environmental conditions that would facilitate or impede the individual's growth, development and performance.
Refers to the process of identifying an individual's specific strengths, developmental needs and need for services. This should include identification of the individual's present developmental level and health status and where possible, the cause of the disability; the expressed needs and desires of the individual and his or her family; and the environmental conditions that would facilitate or impede the individual's growth, development and performance.
The Glossary explains some of the references cited and goes into more detail about the ICF/IID program.
See also a 2014 article by Tamie Hopp, "People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities", on the history of deinstitutionalization of people with ID/DD, the predictable tragic consequences, and often willful misinterpretations of the 1999 Supreme Court Olmstead decision.
See also a 2014 article by Tamie Hopp, "People as Pendulums: Institutions and People with Intellectual and Developmental Disabilities", on the history of deinstitutionalization of people with ID/DD, the predictable tragic consequences, and often willful misinterpretations of the 1999 Supreme Court Olmstead decision.
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