Developmental Disabilities KNR 365

Communication Disorders Pervasive Developmental Disorders 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) 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.co m/ Anixter Center http://www.anixter.org/ Helping Hand http://www.hhrehab.org/

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