TREATMENT PATH STAGE I: IDENTIFYING A DEVELOPMENTAL DISABILITY | TREATMENT PATH STAGE II: REFERRALING | TREATMENT PATH STAGE III: ASSESSING AND DIAGNOSING A DEVELOPMENTAL DISABILITY | TREATMENT PATH STAGE IV: TREATING A DEVELOPMENTAL DISABILITY | TREATMENT PATH STAGE V: MONITORING AND REVIEWING | APPENDIX A | APPENDIX B
This Clinical Information Guide1 is one in a series of guides designed to assist caseworkers and supervisors in identifying and managing clients who need mental health services. These guides use the treatment pathways model,2 which outlines five stages to assist you in obtaining the best possible mental health services for your clients. Each guide is designed to highlight the primary casework task that needs to be accomplished at each stage, and to address common questions that you might have as you complete each task.
What are the five stages of the Treatment Pathways Model?
In the identification stage, you gather information concerning the identified problems, consult with your supervisor and the behavioral health consultant, and decide whether or not your client needs to be referred to a developmental specialist. In the referral stage, you follow established procedure by completing required documentation and selecting the appropriate developmental specialist. In the assessment and diagnosis stage, you assist the specialist by furnishing relevant information concerning your client. In the treatment stage, you work collaboratively with the clinician to identify treatment goals and secure the most effective treatment available for your client. In the monitoring and reviewing stage, you ensure that reasonable treatment goals are achieved.
Primary Casework Task: To gather information to decide whether or not your client exhibits the symptoms of a developmental disability and to consult with your supervisor and the behavioral health consultant to determine if a referral for an evaluation or clinical intervention is needed.
What is a developmental disability?
Developmental Disabilities is a term that arose in the 1960s to describe disorders that cause (1) disability, (2) begin early in life, and (3) require supportive services (Disability in America, 1991). Many of the more commonly known developmental disabilities are mental retardation, cerebral palsy, epilepsy, autism, and serious sensory impairments (e.g. deafness, blindness, and learning disability).
There are a number of labels and phrases that are often used interchangeably when discussing developmental disabilities. These labels, such as developmental disorder, developmental problem, developmental delay, and learning problems all point to developmental issues or problems. However, the phrase developmental disability has a very specific meaning, definition, and criteria for usage .
There are several different terms that are used to denote these developmental problems. Where definitional differences exist, they are primarily related to the purpose of the use of a particular phrase (eligibility for service criteria vs. clinical diagnostic criteria).
How common is a developmental disability?
While the number of individuals in the general population with developmental disabilities is relatively small (5-8%), the number of individuals with developmental problems entering the child welfare system is thought to be much larger. A number of researchers, including Weber (1990) and Holzberg (1991), have estimated that the percentage of children entering the child welfare system for the first time, who have either a medical, behavioral, or developmental disability, is as high as 41%. In studies done in Connecticut and Illinois, initial screenings of randomly selected children who had been admitted to child welfare shelters, revealed the presence of numerous medical (e.g. undocumented vaccinations, untreated infections, elevated lead levels), behavioral (e.g. high levels of aggression, non-compliance, school truancy, contacts with law enforcement agencies), and developmental disabilities (e.g. mental retardation, speech and language dysfunctions, and specific learning disabilities). These undiagnosed disabilities accounted for greater than 34% of the overall number of children identified as having any of the above-mentioned problems. Although the number of children identified as having developmental problems (e.g. they do not meet the specific diagnostic criteria for a `disability') was greater than those eventually identified as having a specific disability, the larger number of children with `developmental problems' also points to the large number of children who are at increased risk for a wide range of problems associated with developmental skills.
What causes a developmental disability?
There are a large number of conditions, disorders, and diseases that either result in developmental disabilities or are associated with developmental problems. The clinical disorders most commonly linked to or causing developmental disabilities can be grouped by their time of onset: hereditary disorders, early alterations of embryonic development, late pregnancy, acquired childhood conditions, and unknown (Disability in America, 1991). Listed below are some examples of the various conditions that can lead to developmental disabilities and the origin of the problem.
Categories of Disorders That Are Associated w/ Developmental Disabilities
Category of Origin |
Cause/Pathology |
Examples |
Risk Factors |
Hereditary |
Metabolic disorders |
Tay-Sachs PKU Neurofibromatosis Fragile-X syndrome Muscular Dystrophy Tuberous Sclerosis |
Family hx Maternal diet Family hx Family hx |
Early Alterations Of Embryonic Development |
Chromosomal changes Intrauterine Toxicity Intrauterine infection Structural Malformation |
Down syndrome Fetal Alcohol Syndrome Lead Exposure Congenital rubella Congenital syphilis Absence of limbs Hydrocephalus Microcephalus Spina Bifida |
Maternal age |
| Late Pregnancy |
Premature Birth Perinatal hypoxia Infection |
Very low birth weight Apgar <4 @ 5 min HIV positive |
|
Acquired Childhood
Infections |
Postnatal Infection Childhood Injury Environmental Toxicity |
Bacterial meningitis Measles encephalopathy Traumatic Brain Injury Lead Poisoning |
|
Unknown |
Autism Cerebral Palsy Epilepsy Mental retardation Learning disorders |
What are the manifestation of a developmental disability?
A developmental disability must (a) cause substantial limitation in three (3) or more major life skill areas (such as Self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency), and, (b) be of such a degree of impairment that specialized services are required.
For many of the developmental disabilities that are currently identified there are multiple causes, although each specific disability and disorder appears to express very similar impairments across affected individuals. For each developmental disability and disorder that is listed below the specific expression of the disability and degree of impairment may differ from one individual to another. While we often observe very similar behaviors, cognitive and physical problems, and medical issues in individuals with similar disabilities, the exact cause of their disability and/or the exact location of the trauma that causes the disability are often different for each individual.
While one may not observe all of the associated findings in each individual who has the disability it is important to note that any one of the numerous developmental, social, or behavioral findings may have significantly adverse and pervasive effects for the individual.
DISABILITY/DISORDER/ SYNDROME |
ASSOCIATED FINDINGS |
Mental Retardation |
Intellectual Impairment Delays/Impairments in Functional skills Delays/Impairments in Adaptive skills Speech & Language Delays/Impairments Gross & Fine Motor Delays Academic Difficulties Depression Lowered self-esteem Aggression/Self-Abuse Difficulty w/ Socialization Difficulty w/ Employment |
Autism |
Development Delays & Atypical Social Development Stereotypic motor patterns Abnormal postures Difficulty w/ social interaction Lack of eye contact Intellectual Impairment Difficulty with Transitions Academic Difficulties Vocational Difficulties |
Cerebral Palsy |
Delays & Atypical Speech & Language Impaired Motor Functioning Mental Retardation Social Isolation Mobility Problems Vocational Difficulties Emotional Problems |
Down Syndrome |
Congenital Abnormalities Mental Retardation Cardiac & Pulmonary Problems Delays/impairments w/ Gross & Fine motor Low muscle tone Aggression in adolescence Depression in adolescence Academic delays |
Fragile X-Syndrome |
Unusual facies |
Fetal Alcohol Syndrome |
Prenatal growth deficiency Facial abnormalities Mental retardation |
Traumatic Brain Injury |
Intellectual Impairment |
Lead Toxicity |
Intellectual Impairment Mental Retardation |
Learning Disabilities |
Intellectual Impairment Mental RetardationAcademic Difficulties Speech & Language Difficulties Gross & Fine Motor Difficulties Visual-Motor/Perceptual Difficultie |
| Attention Deficit Hyperactivity Disorder |
Academic Difficulties |
Do symptoms differ in children and adults?
Depending on whether the developmental disability causes mild, moderate, or severe impairments in functioning, children and adults may demonstrate either very similar or dissimilar manifestations of the disability. While the specific area of limitation or impairment may be similar (e.g. impairments in motor skills, language ability, or cognition), individuals of different ages will often demonstrate differences in how the disability affects their functioning based on the severity of the disability. What has been clearly established is that the earlier (both in terms of age and relative to on-set of problems) that appropriate intervention services are provided, the greater the likelihood that the adverse effects of the disability can be lessened.
Primary Casework Task: To complete the required referral process, including gathering supporting documentation, and to select the appropriate developmental specialist to assess, diagnose, and treat your client.
What kinds of developmental specialists can evaluate my client?
Psychologists (Ph.D., Psy.D.) , physicians (M.D., including psychiatrists), licensed clinical social workers (L.C.S.W.). These developmental specialists may be found at community mental health agencies, local school districts, the psychiatry and psychology department of hospitals or clinics, health maintenance organizations, university or medical school-affiliated programs, family service or social service agencies, and private clinics.
Where do I refer?
The age of the client, the type of disability, and the degree of impairment are the three main considerations when determining where to refer a client for intervention services.
For wards between 0-3 years, DCFS provides a developmental screening program to determine the client's developmental status. If needed, the child will be referred for a more comprehensive multidisciplinary assessment, and then to early intervention services.
For children between the ages of 3-5 years, the local school districts are required to offer `early childhood' screens to determine whether the youngster is at-risk for educational difficulties. Early Childhood programs sponsored by the local school district are available for those clients who show specific developmental and educationally related problems.
Children 6 years and older are eligible to be evaluated through their local school district if it is felt that they are having significant problems affecting their ability to learn along with their peers. The schools will provide a complete educationally focused assessment and determine whether the child requires any special services.
There are also numerous licensed professionals capable of providing assessments to determine the presence of developmental disabilities. However, in most instances, a multidisciplinary assessment is superior to an individualized assessment.
Primary Casework Task: To assist the developmental specialist by furnishing relevant information concerning your client's developmental status
Because any specific developmental disability may involve a wide range of developmental and functional problems, it is important to approach the assessment and diagnosis of DD from a multidisciplinary perspective. The first step to getting appropriate diagnosis and treatment for a developmental disability is a thorough diagnostic evaluation by a multidisciplinary team. No one professional discipline has the training necessary to assess all aspects of developmental disabilities. The team will gather a complete history of the client, including birth and development status, school, social and adaptive functioning, and behavioral development. The assessment must include input from across multiple environments.
Assessment areas need to include: physical, cognition, speech and language, motor, perception, academic, adaptive, emotional, and adaptive and social functioning. The assessment and diagnosis of certain developmental problems can be influenced by the choice of testing tools, cultural sensitivity of the examiner, and the social class and ethnic composition of the service environment.
Are there different kinds of developmental disabilities?
The term developmental disability encompasses a wide range of disorders that significantly impact an individual's functioning. While there are many different types of specific developmental disabilities (e.g. autism, cerebral palsy) there are also numerous other illness and disorders that can cause significant developmental problems. The central concern for the caseworker is the limitations in life skill functioning that are caused by the disability. Some developmental disabilities cause delays or impairments in speech and language development, while others affect motor skills. Others result in problems across many areas of functioning.
Primary Task: To secure the most effective treatment available for your client's a developmental disability and to work collaboratively with the treating clinician to identify treatment goals and objectives.
Depending on the nature and severity of the disability, services for individuals with developmental disabilities are available at birth and continue into adulthood. The types of services and programs that are available encompass a broad range, including specialized medical and therapeutic services, special education, community-based programs, vocational, and residential alternatives. Many different federal and state agencies provide these services and/or the funding. The `points of service' listed below are not intended to be inclusive of all types of DD programs, rather they illustrate the types of programs that are available at different ages and within different environments.
BIRTH TO THREE: All children, between the ages of birth through three, who are suspected of having a developmental delay, are entitled to a free developmental screening. Within DCFS there have been staff hired in the three Cook regions that will provide this screening.
If the screening results in either an identified delay or a suspicion that a child is at risk for a developmental delay, the child should be referred for a comprehensive assessment, at no cost to the family. Within Illinois there are 16 agencies, under contract to the State of Illinois, who provide these assessments.
If the child qualifies for program services, as a result of the assessment, an Individual Family Service Plan is development to identify goals for the child and family.
EARLY CHILDHOOD: From the ages of 3 to 5 years, children are entitled to free developmental screenings and evaluations through their Local Educational Agencies (LEA). Each school district, or groups of schools districts ("Cooperatives"), is required by both federal and state law to provide both screenings and evaluations, and educational programs to meet the needs of disabled children. The child's developmental status will be assessed, and if found to be sufficiently delayed or atypical, specialized services are available at no cost to the family. Depending on the nature of the delays either half-day or full-day services are available.
SPECIAL EDUCATION: According to federal and state law, children between the ages of 3-21 years are entitled to a free appropriate education that will meet their unique educational needs.. Current law, The Individuals with Disabilities Education Act (PL105-17), enacted in 1997, articulates federal policy towards special education needs. Special educational services remain free, with transportation provided by the local school district.
TRANSITIONAL: Planning for adulthood, while taken for granted as being part of the normal course of growing up, is often a very difficult and time consuming component in the lives of individuals with developmentally disabilities. In recognition of the complexities and the need for coordination of a myriad of services, the planning for `after-graduation' needs begins at a much earlier time for the individuals with disabilities. Transition planning is required for all DD wards beginning at age 14 ½ .
From a clinical and program perspective, the teenage years present some of the biggest hurdles for individuals with disabilities. When compared to their non-disabled peers, the teenager with disabilities faces numerous additional obstacles and barriers to full integration into society. While issues of employment, dating, independence, and autonomy impinge on the non-disabled teenager with great impact and turmoil, for individuals with disabilities, the barriers and obstacles to independence and autonomy are magnified by the nature of their disability and society's reluctance to provide the needed supports and opportunities to achieve these goals.
Issues of personal autonomy and independence have often been ignored or minimized in discussions related to transitional issues facing individuals with disabilities. Housing and supportive employment opportunities have preoccupied professionals to the detriment of discussions related to helping individuals with disabilities maximize their personal autonomy and independence. Most efforts to teach independent living skills, such as taking public transportation, banking, shopping, and food preparation occur after the individual has transitioned to an adult living and employment program.
Another transition area, which has been somewhat taboo, is the issue of social intimacy. While non-disabled teenagers enter into an exiting period of dating and social intimacy, for individuals with disabilities there are very few opportunities to meet, socialize and develop relationships. Just as the existence of mental health issues has recently been acknowledged to exist along side that of developmental disabilities, people now acknowledge that there are also wishes and yearnings for intimacy and social relations that exist for individuals who have disabilities. Opportunities to meet, socialize and develop relationships is extremely difficult, not the least because there are transportation problems, few settings for activities, and a hesitancy on the part of parents and caregivers to be seen as `encouraging' any potential intimate activity
EMPLOYMENT: Employment is a significant issue for individuals with disabilities. Many teenagers, starting at the age of 16 years, work part time after school and full time during summer vacations. Individuals with disabilities often find it difficult to obtain employment, even on a part-time basis. While the number of employers willing to hire teenagers who have disabilities has increased, the range of employment options are still limited. The more severe the disability the greater the difficulty in obtaining employment. During this transitional period, opportunities for employment, which also involve increasing opportunities and demands for autonomy, independence, responsibility, and socialization, are essential components to service planning. While many community agencies provide supportive employment and job coaching for the adult individual with disabilities, for teenagers going through the transition period there are still limited opportunities for these support services.
COMMUNITY: Many communities have developed programs and services for the disabled, which are free or cost a nominal fee. These programs range from after school and weekend sports, camping, field trips, and social activities, to adult educational classes. Many communities have pooled their resources to form "Special Recreation Districts", which are able to provide a wider range of services.
Unfortunately, many communities have still not been receptive to housing and service programs for the disabled being situated in close proximity to their residential area. Lower property values and higher crime rates have often been cited as the reason to not include the disabled in a community. While there is no evidence to indicate that residential and DD social services have a negative impact on a community, underlying prejudices continue to be felt in many communities.
ADULTHOOD: The provision of adult services to the disabled is not as extensive as that provided children with disabilities. In most states a Department of Human Services is charged with the legal obligation to develop networks of services for adults with disabilities. Unfortunately, the current approach to services for the adult DD client is one of benign neglect. Unless they are severely disabled, the adult with disabilities will find very few services available. Most importantly, supportive services concerning issues of socialization, mental health, and other `soft' human issues are almost entirely ignored.
Appropriate housing, either in apartments, group homes, or other congregate living arrangements have very restrictive admission criteria, leaving many mild to moderately disabled individuals to live with family or friends, even though they wish to live more independently.
Vocational opportunities for the developmentally disabled remain limited. While modifications to the work environment have been made for the physically and sensory impaired, the range of work opportunities is still very restricted.
The social needs of the disabled are no less than that of the non-disabled. The stigmatization that accompanies disability makes it even more difficult for individuals to access and participate in community social activities. Where social activities are planned they tend to be segregated from the non-disabled, further isolating the disabled.
What kinds of treatment are available?
The nature of treatment services for individuals with developmental disabilities depends on the specific disability, the age of the individual and the degree of impairment caused by the disability.
In general, most treatment services occur under the auspices on local educational agencies, either through early intervention, early childhood, or special educational programs. These services tend to be either half-day or full day programs depending on the age of the child.
Many impairments associated with developmental disabilities require individual interventions. Impairments in speech and language, motor , and social and behavioral skills often are treated through individual sessions with licensed clinicians. Sometimes these can be obtained through the local school systems as part of the child's educational program. Often, however parents need to obtain these services through private providers.
The most effective treatment services for developmental disabilities are multidisciplinary and require interventions across multiple environments (e.g. school, home, community)
What are the most effective kinds of treatment
The most effective interventions depend on the nature and extent of the disability. In general, approaches that focus on the behavioral expressions and functional patterns of the impairments are the most effective. Approaches that focus on specific skill acquisition, target specific functional areas, and have a strong behavioral and positive reinforcement component, have been shown to be most effective in reducing the effects of the impairments associated with the developmental disability.
Where can my client obtain information about a developmental disability?
There are numerous sources for information concerning the diagnosis and treatment of a developmental disability. Some of these sources are outlined in the Resources for Clients section at the end of this Clinical Information Guide.
TREATMENT GOALS
How do I collaborate with the developmental specialist and my client to design treatment goals?
Developing treatment goals is a critical step in the treatment process. Clear, objective treatment goals enable the client, family, and service provider to address the client's developmental needs.
There are two broad kinds of treatment goals: Administrative and clinical. Administrative goals involve the completion or non-completion of services. Examples of administrative goals include the number of days of school or vocational workshop attendance. Clinical treatment goals address two domains related to a client's overall functioning: behavior change, and changes in daily functioning ability
a) Behavior change -- A change in the behaviors associated with a developmental disability (e.g. non-compliance, depression, aggression)
b) Functional change -- A change in the areas of functioning that are typically affected by a developmental disability. These areas include:
· home or family (for example, increased personal independence, improved ability to get along with family members, or increased participation in family chores)
· school or work (for example, increased attendance, better grades, or improved
performance evaluations at work)
· friends or community (for example, more frequent socializing with friends).
You will need to collaborate with your client and the developmental specialist to create treatment goals that address your client's symptoms and the areas of functioning that are critical to your client fulfilling his or her service plan. You will need to work with the developmental specialist to determine the manner and frequency with which treatment goals will be measured.
Primary Task: To ensure that you receive timely and appropriate documentation from the developmental specialist that reviews progress towards treatment objectives.
How do I know if treatment is working?
The effectiveness of intervention services are determined by variety of means:
_ Direct observation of the client
_ Information from caregivers, teachers, other service providers
_ Results of formal assessments, self-reports inventories
Decreases in problematic behaviors, increases in identified behavioral skills, and increases in identified functional abilities are all indications that services are being effective. More severe impairments often require longer periods of intervention before positive changes are seen.
Treatment Outcomes
What role do I play in monitoring my client's treatment goals?
Usually the developmental specialist or service program will gauge the success of intervention services by observing changes in your client's behavior and functioning or by administering assessments to measure changes in behavior and functional improvements.
Because of your extensive knowledge of the client's behavior, the specialist may ask you about the client's functional change in different areas. For example, the specialist may ask you about your client's ability to get along with peers or other family members.
If your client is not improving, you will want to talk with the developmental specialist concerning factors in the client's life that could be complicating recovery. Perhaps after treatment began, additional life stress or change occurred in the client's life, such as the death of a loved one or a change of job. Sometimes a client in psychotherapy may not find the treatment helpful, and other forms of treatment may need to be added, such as medication.
Documentation
DEVELOPMENTAL DISABILITIES TREATMENT PATHWAYS
Treatment Path Stage Clinical Information Casework & Administrative
Tasks
|
I. Identification of problem |
Person with a developmental disability will have substantial limitations in at least one of the following areas:
_ Acquisition of academic knowledge _ Daily skills requiring reading, writing, math Developmental Disabilities associated with a wide range of disorders:
_ Cerebral Palsy _ Mental Retardation |
Casework Tasks: a) Obtain input from caregivers, teachers, and others who have on-going contact with client. b) Observe client c) Review clinical records d) Consult with supervisor & behavioral health team Administrative Task: · Document in case record |
|
II. Referral |
Depending on age of client: _ 0-3: DCFS Early Childhood program _ 3-5: In Chicago, Chicago Public Schools Early Childhood Program _ 6+: Local School District |
Administrative Tasks: a) Complete referral to licensed developmental specialist or authorized program. b) Include relevant clinical and case records with your referral. c) Document in case record. |
III A. Assessment |
Multidisciplinary team assessment is best approach. Areas to be assessed include:: _ Cognition _ Speech & Language _ Gross & Fine Motor _ Visual-Motor & Visual-Perceptual skills _ Social/Adaptive _ Learning Disability (as warranted) _ Physical/Medical sub-specialties (as needed) Assessment by developmental specialist or multidisciplinary team must include: a) Interview of client, parent, and teacher b) Review of case and clinical records Assessment may also include: a) Observation of client in different settings b) Clinical assessment using rating scales or other formal tests |
Administrative Task: · Ensure developmental specialist has all relevant casework and clinical records. |
|
III B. Diagnosis |
Developmental Disabilities is: _ A severe, chronic condition, _ Caused by physical or mental impairment, _ Occurring before the age of 22, _ Is likely to continue indefinitely, _ Results in substantial limitations in three or more areas:
2. Receptive or expressive language 3. Learning 4. Mobility 5. Self-Direction 6. Capacity for Independent Living 7. Economic elf-sufficiency, and Requires specialized services and supports |
Administrative Task: · Ensure developmental specialist has all relevant casework and clinical records. |
|
IV. Treatment |
All treatment services must be individualized to: _ Age of client _ Nature of disability _ Severity of impairments Intervention services need to be strength based and focused on: _ Specific areas of deficit _ Specific functional skills _ Identified behavioral concerns _ Identified strengths of client |
Casework Task: Work collaboratively with developmental specialist and team to establish clear, measurable treatment goals that assess your client's change in:
|
|
V. Monitoring & Review of Treatment |
Tx objectives to be monitored include: _ Increases or decreases in identified behaviors _ Increases in functional skills Measurement and monitoring of treatment outcomes done thru: _ Direct observation of client _ Interview with family, teachers _ Formal assessments |
Casework Tasks: a) Work with developmental specialist and client to evaluate progress toward treatment goals. b) If necessary, work with specialist to revise treatment goals or to consider other kinds of treatment. Administrative Tasks: a) Obtain copies of written treatment summaries from developmental specialist. b) Document client's progress in case record. |
LOCAL CLINICAL RESOURCES
RESOURCES FOR CLIENTS
Where can my client obtain information about a developmental disability?
There are numerous resources for information concerning the diagnosis and treatment of a developmental disability. Your clients can obtain information about a developmental disability by contacting the following agencies:
Illinois Department of Human Services
Division of Developmental Disabilities
......
Your local School district
Illinois Autism Society
Local chapter of the Association of Retarded Citizens
Illinois Psychological Association
Illinois Association of Speech and Language Pathologists
1 Portions of this Clinical Information Guide are adapted from A developmental disability, a patient information guide published by the National Institute of Mental Health, and Major Depressive Disorder: A Patient and Family Guide, which is published by the American Psychiatric Association.
2 The treatment pathway for a developmental disability is summarized in Appendix A.
TREATMENT PATH STAGE I: IDENTIFYING A DEVELOPMENTAL DISABILITY | TREATMENT PATH STAGE II: REFERRALING | TREATMENT PATH STAGE III: ASSESSING AND DIAGNOSING A DEVELOPMENTAL DISABILITY | TREATMENT PATH STAGE IV: TREATING A DEVELOPMENTAL DISABILITY | TREATMENT PATH STAGE V: MONITORING AND REVIEWING | APPENDIX A | APPENDIX B