Developmental Disabilities KNR 365
Developmental Disabilities
KNR 365
DSM-IV-TR: Disorders Usually First Diagnosed in Infancy, Childhood, or Adolescence
Mental Retardation Learning Disorders Motor Skills Disorder Communication
Disorders Pervasive
Developmental Disorders
Attention-Deficit and Disruptive Behavior Disorders
Feeding and Eating Disorders of Infancy or Early Childhood
Tic Disorders Elimination Disorders Other Disorders
Developmental Disabilities (Text Plus) Text
Attention-Deficit / Hyperactivity Disorder
Mental Retardation / Developmental Disability
Carter & Van Andel, 2011 Intellectual Disability
(1-3% of population) Severe Multiple
Impairments Autism (1/50)
Robertson & Long, 2008 Intellectual Impairment Autism Cystic Fibrosis Cerebral Palsy Fetal Alcohol Syndrome Spina Bifida Deafness or blindness Muscular Dystrophy Learning Disability
PL 91-517 (1970) ID, CP, Autism, Epilepsy
Assignment Cerebral Palsy
Fetal Alcohol Syndrome
Spina Bifida
Learning Disability
Autism
Developmental Disabilities Severe, chronic disability
Result from mental or physical impairments Manifested before age 22 Likely to continue indefinitely Results in substantial limitations in 2 or more of
the following areas of major life activity Self-care Receptive and expressive language Learning Mobility Self-direction Capacity of independent living Economic self-sufficiency
Developmental Disabilities (Cont.) Reflects the person’s need for a combination and
sequence of special interdisciplinary, or generic, services, supports or other assistance that is of lifelong or extended duration.
Has begun to take a life-span development approach
Robertson & Long, 2008
DD may occur up to 22 years; low IQ scores are not necessary
ID is usually present at birth; low IQ scores are necessary
Carter & Van Andel, 2011
Mental Retardation (APA DSM-IV-TR) Significantly subaverage intellectual
functioning: an IQ of approximately 70 or below on an individually administered IQ test (for infants, a clinical judgment of significant subaverage intellectual functioning)
Concurrent deficits or impairments in present adaptive functioning (i.e., the person’s effectiveness in meeting the standards expected for his or her age by his or her cultural group) in at least 2 of the following areas: communication, self-care, home living, social/interpersonal skills, use of community resources, self-direction, functional academic skills, work, leisure, health, and safety
Mental Retardation (APA) The onset is before age 18 years
85% Mild mental retardation (50-55 to approx. 70) Educable
10% Moderate mental retardation (35-40 to 50-55) Trainable
3-4% Severe mental retardation (20-25 to 35-40) 1-2% Profound mental retardation (below 20 or 25) Mental retardation, severity unspecified (IQ
untestable by standard tests)
DSM-V definition is similar to aaidd
Intellectual Disability (American Association on Intellectual & Developmental Disabilities ---aaidd)
Intellectual disability is a disability characterized by significant limitations both in intellectual functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range of everyday social and practical skills. This disability originates before the age of 18
In addition to an assessment of intellectual functioning, professionals must consider such factors as community environment typical of the individual’s peers
and culture linguistic diversity cultural differences in the way people communicate,
move, and behavior
Intellectual Disability (American Association on Intellectual & Developmental Disabilities ---aaidd) The IQ test is a major tool in measuring intellectual
functioning, which is the mental capacity for learning, reasoning, problem solving, and so on. A test score below or around 70—or as high as 75—indicates a
limitation in intellectual functioning. Other tests determine limitations in adaptive behavior,
which covers three types of skills: 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 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
Intellectual Disability (American Association on Intellectual & Developmental Disabilities ---aaidd)
Emphasis from providing programs to people with intellectual disability to designing and delivering support tailored to each individual to help them reach their highest level of functioning.
Views intellectual disability as a condition that could be enhanced by provision of supports, rather than as a static, lifelong disability. Intermittent, Limited, Extensive, Pervasive
Every individual who is or was eligible for a diagnosis of Mental Retardation is eligible for a diagnosis of Intellectual Disability.
Severe Multiple Impairments
Severe Multiple Impairments Carter & Van Andel, 2011
Has either a profound disability or a combination of disabilities Dual diagnosis
Require extensive and ongoing support services in more than 1 major life activity (e.g., toileting, feeding, ambulation)
Pervasive Developmental Disorders
DSM-IV-TR
Autistic Disorder A total of 6 (or more) items from 1, 2, and 3, with at
least two from 1, and one each from 2 and 3 1. Qualitative impairment in social interaction, as
manifested by at least two of the following: Marked impairment in the use of multiple nonverbal
behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
Lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
Lack of social or emotional reciprocity
Autistic Disorder 2. Qualitative impairments in communication as
manifested by at least one of the following: Delay in, or total lack of, the development of spoken
language (not accompanied by an attempt to compensate through alternative modes of communication such as gestures or mime)
In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
Stereotyped and repetitive use of language or idiosyncratic language
Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
Autistic Disorder 3. Restricted repetitive and stereotyped
patterns of behavior, interests, and activities, as manifested by at least one of the following: Encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, nonfunctional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of objects
Autistic Disorder Delays or abnormal functioning in at least one
of the following areas, with onset prior to age 3 years: Social interaction Language as used in social communication, or Symbolic or imaginative play
Evident prior to age 3. Some may have relative normal development for 1-2 years
The disturbance is not better accounted for by Rett’s Disorder of Childhood Disintegrative Disorder
Rett’s Disorder Only in females
All of the following Apparently normal prenatal and perinatal
development Apparently normal psychomotor development
through the first 5 months after birth Normal head circumference at birth
Rett’s Disorder Onset of all of the following after the period of
normal development: Deceleration of head growth between ages 5 and 48
months Loss of previously acquired purposeful hand skills
between ages 5 and 30 months with the subsequent development of stereotyped hand movements (e.g., hand-wringing or hand washing)
Loss of social engagement early in the course (although often social interaction develops later
Appearance of poorly coordinated gait or trunk movements
Severely impaired expressive and receptive language development with severe psychomotor retardation
Childhood Disintegrative Disorder Apparently normal development for at least the
first 2 years after birth as manifested by the presence of age-appropriate verbal and nonverbal communication, social relationships, play, and adaptive behavior
Clinically significant loss of previously acquired skills (before age 10 years) in at least two of the following: Expressive or receptive language Social skills or adaptive behavior Bowel or bladder control Play Motor skills
Childhood Disintegrative Disorder Abnormalities of functioning in at least two of
the following: Qualitative impairment in social interaction (e.g.,
impairment in nonverbal behaviors, failure to develop peer relationships, lack of social or emotional reciprocity)
Qualitative impairments in communication (e.g., delay or lack of spoken language, inability to initiate or sustain a conversation, stereotyped and repetitive use of language, lack of varied make-believe play)
Restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, including motor stereotypies and mannerisms
Childhood Disintegrative Disorder The disturbance is not better accounted for by
another specific Pervasive Developmental Disorder or by Schizophrenia
Asperger’s Disorder Qualitative impairment in social interaction, as
manifested by at least two of the following Marked impairment in the use of multiple
nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
Lack of spontaneous seeking to share enjoyment, interests or achievements with other people (e.g., by a lack of showing, bringing or pointing out objects of interest to other people)
Lack of social or emotional reciprocity
Asperger’s Disorder Restricted repetitive and stereotyped patterns
of behavior, interests, and activities, as manifested by at least one of the following: Encompassing preoccupation with one or more
stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, nonfunctional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of objects
Asperger’s Disorder The disturbance causes clinically significant
impairment in social, occupational, or other important areas of functioning
There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years
There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood
Criteria are not met for another PDD or schizophrenia
Pervasive Developmental Disability Not Otherwise Specified Atypical autism Late age onset Atypical symptomatology
Autism Spectrum Disorder (DSM-V) Must meet criteria A, B, C, and D: A. Persistent deficits in social communication and social
interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following: 1. Deficits in social-emotional reciprocity; ranging from abnormal social
approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
2. Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated- verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
3. Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
Autism Spectrum Disorder (DSM-V Proposed) Restricted, repetitive patterns of behavior, interests, or
activities as manifested by at least two of the following: 1. Stereotyped or repetitive speech, motor movements, or use of
objects; (such as simple motor stereotypies, echolalia, repetitive use of objects, or idiosyncratic phrases).
2. Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
3. Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
Autism Spectrum Disorder (DSM-V Proposed) C. Symptoms must be present in early
childhood (but may not become fully manifest until social demands exceed limited capacities)
D. Symptoms together limit and impair everyday functioning.
Controversies for DSM-V Autism Removal of Aspergers
Removal of PDD-NOS Concern might go to another category
Practice Settings
Practice Settings Parks & Recreation SRA Day programs Group homes Schools Residential facilities Special Olympics The ARC Easter Seals
Year-round programs Camps Afterschool Respite Misericordia
http://www.misericordia.com/
Anixter Center http://www.anixter.org
/
Helping Hand http://www.hhrehab.or
g/
Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) 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
Institution for persons with mental retardation means an institution (or distinct part of an institution) that -- 1. Is primarily for the diagnosis, treatment, or
rehabilitation of the mentally retarded 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.
Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) Active Treatment
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. Comprehensive functional assessment Individual program plan Community integration Normalization
Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) QMRP: Each client's active treatment
program must be integrated, coordinated and monitored by a
qualified mental retardation professional who (1) has at least one year of experience working directly with persons with mental retardation or other developmental disabilities; and (2) is one of the following: (i) a doctor of medicine or osteopathy; (ii) a registered nurse; (iii) an individual who holds at least a bachelor's degree in a professional category specified
Illinois: Qualified Intellectual Disabilities Professional (QIDP) BS in recreation
Intermediate Care Facilities for the Mentally Retarded (ICFs/MR) Currently, all 50 States have at least one
ICF/MR facility. This program serves approximately 129,000
people with mental retardation and other related conditions. Most have other disabilities as well as mental retardation.
Many of the individuals are non-ambulatory, have seizure disorders, behavior problems, mental illness, visual or hearing impairments, or a combination of the above.
All must qualify for Medicaid assistance financially
Goal for Individuals with Intellectual and Developmental Disabilities (UCP) Live in and participate in their communities Have satisfying lives and valued social roles Have sufficient access to needed support Have control over that support so that the
assistance they receive contributes to lifestyles they desire
Be safe and healthy in the environments in which they live
2011 Case for Inclusion 33,000 Americans with ID/DD still live in 162 large,
state-run institutions Too many people still do not live in the community Bottom 10 states in terms of quality of Medicaid service
1. Indiana 2. North Carolina 3. Utah 4. Oklahoma 5. Nebraska 6.DC 7. Illinois 8. Texas 9. Arkansas 10. Mississippi
Photovoice Several recent studies Brake, Schleien, Miller, & Walton (2012)
Photovoice: A Tour Through the Camera Lens of Self-Advocates Social Advocacy and Systems Change Journal, 3(1), 44-53
Themes: Hidden talents Community membership and sense of belonging Consumerism and making choices Desired independence Limited connections to the community Desire to be treated as adults
SRAs (28) Entry level position (direct leadership)
Coordinators and Managers
Superintendent and Directors
Intervention Areas
Porter & burlingame, 2006
Intervention Areas: Intellectual Disabilities Lack of diversity of leisure skills Specific leisure skill deficits Opportunities for collateral skill development
Communication and language Cooperation, relationship building, taking turns Appropriate manipulation of materials Increased body image and self-image
Impaired ability to generalize skills Impaired social skills
Friendships Age-inappropriate leisure interests Impaired community integration skills Safety concerns Problems with decision-making Physical fitness concerns
Aging and Developmental Disabilities
Achieving a Better Life Experience (ABLE) Act Petition from Sara Wolff
I’m 31 years old, and I happen to have Down syndrome. I have two jobs, and lead an independent life, however, when my mom died suddenly last year, things got a lot harder for myself and my family. I want to support myself and save money for my future, but if I same more than $2,000, I’ll lose the benefits I depend on like Medicaid and Social Security.
That’s because of a law that says that people with disabilities like me can’t have more than $2,000 in assets or we risk losing the benefits we need to live. For me, living on my own, that means I can’t even save enough to put down rent and a security deposit on an apartment. This law keeps me dependent on other people, and that’s really scary now that my mom is gone.
Achieving a Better Life Experience (ABLE) Act Establish tax free ABLE savings account
Tax exempt Not count as part of asset limitations for eligibility
to federal programs Must be used for qualified disability expenses
Education Primary residence Transportation Obtaining & maintaining employment Health & wellness
Been trying to pass congress for the last 7 years
Issues Inclusion in community senior centers