In an article in the Portland (Maine) Press Herald, “Out of the spotlight, DHHS cuts away at humane care”, 1/6/16, Bill Nemitz covers a story unfolding in Maine that could spell disaster for adults with severe developmental disabilities. The state justifies cuts to services by claiming that it wants to realign services with what people actually need. This is not a new concept, but Maine officials also want to “guard against attitudes that would inappropriately limit what an individual can do,” says Health and Human Services Commissioner Mary Mayhew.
Those bureaucrats in Maine may have a cruel streak or maybe they are just delusional, but at least they have a sense of irony, as Nemitz points out. They are calling their new assessment policy, the “Supporting Individual Success rate-setting initiative”.
For people unfamiliar with disabled adults with profound disabilities, especially those with dangerous behaviors that put them at extreme risk of harm, it may be hard to believe that their needs justify so many service hours. But consider the testimony of the executive director of a provider of residential services. He says that 76 of 91 people that his agency serves will have their service hours cut and gave examples of the people affected:
- Peter, 91, whose diagnosis includes profound mental retardation and a host of other disorders, will see his staffing hours drop from 200 per week (at times he needs two staffers) to 69.
- Mariya, 30, has autism with severe mental retardation and takes 30 medications per day. Her hours will decrease from 232 to 99.
- Thomas, 54, has autism with severe mental retardation and several other disorders along with a recent diagnosis of melanoma. His hours will drop from 240 to 102.
- Jono, 28, has autism, mental retardation, cerebral palsy, mood disorder and severely intrusive behaviors. He gets 210 hours now; he’ll soon get 102.
- Dan, 24, has mental retardation, quadriplegic cerebral palsy, seizure disorder and is unable to talk or feed himself. His hours will drop from 141 to 99.
Mary Mayhew from DHHS says in response to criticism of the proposed initiative that the state will create a new system that is “free from the perverse incentives that may exist from the providers’ perspective.”
If the proposed scheme to allow people to live independently without the services they need doesn’t work for these severely disabled adults, they can appeal to the state for extra help. The qualifications for staffing, however, will be so high that when extra help is approved, providers fear they will not be able to meet the standards proposed by the state. As a father of two affected adults described it, "...It's designed for failure."
Read more of the story for many more personal stories from families.
The Individual Program Plan (IPP) Under Fire: Three Things Every Parent and Conservator Must Know from Autism Society SF Bay Area on Vimeo.
I am generally critical of the ARC and its reputation nationally for imposing its ideology of full inclusion on people with disabilities and their families regardless of need or individual circumstance. This presentation, however, by Barbara Maizie, Executive Director of the ARC of Contra Costa County, California, and a member of Keeping the Lanterman Promise on the importance of the Individualized Program Plan (IPP) is the best I have ever seen. It was part of the Autism Society San Francisco Bay Area's 2015 Conference, "Let a Thousand
Flowers Bloom: The Bay Area Adult Autism/DD Programs and Housing
Summit." The conference took place October 23, 2015 at Santa Clara
University and featured more than 50 speakers.
In Michigan, the equivalent to the IPP is the Individual Plan of Service (IPOS) required by state law for everyone receiving mental health services through the Community Mental Health system. Her message applies here and in other states that require DD services as an entitlement under protections in their state laws.
Update on Barbara Maizie: I had never met Barbara except through this video. Sadly, she was diagnosed with a brain tumor earlier this year and died on August 13, 2016. It makes me appreciate even more the influence that one person can have.
The term “intellectual disability” replaces the term “mental retardation”. In the campaign to banish the “R-word”, it sometimes seemed advocates wanted to banish “mental retardation” entirely, but the condition did not magically go away.
Surprisingly, the term “intellectual disability” is not defined by the DD Act.
The definition that is often referred to when doing a search for “intellectual disability”, comes from the American Association on Intellectual and Developmental Disabilities (AAIDD):
Definition of Intellectual Disability
Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18.
Intellectual Functioning
Intellectual functioning—also called intelligence—refers to general mental capacity, such as learning, reasoning, problem solving, and so on.
One way to measure intellectual functioning is an IQ test. Generally, an IQ test score of around 70 or as high as 75 indicates a limitation in intellectual functioning.
Adaptive Behavior
Adaptive behavior is the collection of conceptional, social, and practical skills that are learned and performed by people in their everyday lives.
- Conceptual skills—language and literacy; money, time, and number concepts; and self-direction.
- Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e., wariness), social problem solving, and the ability to follow rules/obey laws and to avoid being victimized.
- Practical skills—activities of daily living (personal care), occupational skills, healthcare, travel/transportation, schedules/routines, safety, use of money, use of the telephone.
Standardized tests can also determine limitations in adaptive behavior.
Age of Onset
This condition is one of several developmental disabilities—that is, there is evidence of the disability during the developmental period, which in the US is operationalized as before the age of 18.
Additional Considerations
But in defining and assessing intellectual disability, the AAIDD stresses that additional factors must be taken into account, such as the community environment typical of the individual’s peers and culture. Professionals should also consider linguistic diversity and cultural differences in the way people communicate, move, and behave.
Finally, assessments must also assume that limitations in individuals often coexist with strengths, and that a person’s level of life functioning will improve if appropriate personalized supports are provided over a sustained period.
Only onthe basis of such many-sided evaluations can professionals determine whether an individual has intellectual disability and tailor individualized support plans.
This is additional information from the AIDD, “Frequently Asked Questions on Intellectual Disability”:
Is intellectual disability the same as mental retardation? Why do some programs and regulations still say mental retardation?
The term intellectual disability covers the same population of individuals who were diagnosed previously with mental retardation in number, kind, level, type, duration of disability, and the need of people with this disability for individualized services and supports.
Furthermore, every individual who is or was eligible for a diagnosis of mental retardation is eligible for a diagnosis of intellectual disability.
While intellectual disability is the preferred term, it takes time for language that is used in legislation, regulation, and even for the names of organizations, to change.
Is intellectual disability the same as developmental disabilities?
"Developmental Disabilities" is an umbrella term that includes intellectual disability but also includes other disabilities that are apparent during childhood.
Developmental disabilities are severe chronic disabilities that can be cognitive or physical or both. The disabilities appear before the age of 22 and are likely to be lifelong.Some developmental disabilities are largely physical issues, such as cerebral palsy or epilepsy. Some individuals may have a condition that includes a physical and intellectual disability, for example Down syndrome or fetal alcohol syndrome.
Intellectual disability encompasses the “cognitive” part of this definition, that is, a disability that is broadly related to thought processes. Because intellectual and other developmental disabilities often co-occur, intellectual disability professionals often work with people who have both types of disabilities.
[These are videos from the San Francisco Bay Area Autism Society housing conference, May 10, 2014.]
Part 1: Autism / Developmental Disability Housing Options: The Growing Need
...Soaring demand with lack of housing options
Part 2: Housing Options: Single-Family Home Based Models
...Overview of autism/DD housing options based on a single-family home
model, including living with parents, legacy homes, licensed group
homes, unlicensed co-ops and adult foster care.
Part 3: Housing Options: Multiplex and Intentional Community Models
...Overview of autism/DD housing options based on multifamily or
congregate models, including market-rate apartments, affordable
"set-aside" units, investment-based multifamily complexes, and
nonprofit intentional communities.
Part 4: Needed Policy Changes
...Overview of many of the policy changes necessary to
facilitate the creation of new housing options for adults with autism
or developmental disability.
