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Synchronous Services

Synchronous Services

OVERVIEW
“The right of all HER citizen to a share in blessing of good living, education and SHE provides it liberally for all her ‘more favored’ children. If some be blind, deaf or any disability, SHE still continues to furnish them with special instruction at great cost; and will SHE longer neglect the poor intellectually challenged-the most wretched of all who are born to HER,-those who are usually abandoned by their fellows -who can never, of themselves, step up upon the platform of humanity,-will SHE leave them to their dreadful fate, to a life of brutishness, without an effort in their behalf?..”

The intellectual challenge is deeply stigmatizing. The presence of one such family member cruelly deprives even the family of a socially satisfying and economically productive life. A large portion of patients needs a continuum of care and year-round medication.

Betwixt and between the tsunami and pre-existing complex humanitarian emergencies many surviving intellectually defective children and adults have had to negotiate a range of constraints. Both intellectually challenged persons and their families have to frequently face scorn, ridicule, fear and rejection because of lack of awareness of the rural society. These stigmatizing influences make life miserable for them and their families and add to their difficulties.

Invariably intellectually challenged persons have to depend on family support where there is none are left to wander.

AMIABLE AID advocates people with intellectual challenge to grow up in their own family. But a major source of worry for parents is the possibility that their defective child may outlive them. The question, “what will happen to my son or daughter after we are no more” keeps bothering them as they and their child grow older. Also, families commonly face the problem of making temporary arrangement for care outside the family in times of crisis, family functions, journeys and other situations. There are also some families in very difficult circumstances, for whom providing care for their retarded member becomes impossible. Even the families who have a high commitment and who are taking good care of their affected member feel the need to be relieved of the stress of care for short periods, to avoid burn-out.

Children with intellectual challenge have been benefitted in the tsunami affected areas through the care home run by AMIABLE AID. Among them, Children of the very disadvantaged cases have been rendered with monthly payeeship assistance.

A group of trained volunteers from AMIABLE AID are supporting families of such persons with a set of teaching materials. In addition to working closely with the families, the project intervention also created awareness and sensitized the communities to the needs of these children. Early intervention provides suitable custodial and educational facilities for the children with intellectual challenge.

As an expansion of its projects, AMIABLE AID is setting out to establish a residential care centre, hospital with research programmes and vocational training centre for the persons with physical and intellectual challenge in Tiruchirapalli district.

SERVICE OPTION
The first step in getting services started is contacting AMIABLE AID. After contacting, a process called ‘intake’ will start. During this process AMIABLE AID will collect information about the individual who has asked for services, help the person to learn about our various programmes.

AMIABLE AID planning and promoting many different service options based on the needs and choices of the people with physical/ Intellectual Challenge and their families. The purpose is to create opportunities for individuals to control their lives as much as possible in the environment that is least restrictive. AMIABLE AID recognizes the importance of involving individuals and members of their families in planning, developing and monitoring the service system.

AMIABLE AID lists these values as the basis for the service system:

o Individual rights,
o Promotion of self-determination,
o Respect,
o Optimal health and safety, and
o Inclusion in the community, utilizing neutral supports and generic community services as much as possible.

amiableAID FOUNDATION lists basic principles that should be followed in providing services, such as:

  • Flexible and stable service systems which promote advocacy, effective communication, targeted outcomes,
  • continuous evaluation, and improvement based on best practice and research;
  • Early identification of needs, including prevention and early intervention services and supports;
  • Timely response to the needs, rights and desires of those served;
  • Treating service recipients and families with dignity and respect;
  • Protecting those served from abuse, neglect, and exploitation;
  • Accurate and responsible accountability for the use of public resources;
  • Ongoing education and skill development of the workforce; and
  • Cultural competence of persons providing service.
  • ASSESSMENT TO AVAIL SERVICES
    Services from AMIABLE AID are available if someone is eligible. AMIABLE AID has had a waiting list for services and has established specific criteria for Assessed Need. Once the Application for services is complete, an intake specialist reviews the Application and assesses the individual’s overall need for services based upon the criteria. The application is then assigned a category of need. The person has multiple urgent issues that are likely to result in a crisis situation if not addressed immediately, will be given first priority.

    The issues may be:

    • Aging or failing health of caregiver and no alternative is available to provide supports,
    • Living situation presents a significant risk of abuse or neglect,
    • Increasing behavioral to self or others,
    • Stability of the current living situation is severely threatened due to extensive support needs or family catastrophe.

    SERVICES AVAILABLE
    Services other than support coordination/case management are based on what each person needs. Other services that available through amiableAID FOUNDATION include:

    1. Institutional based long-term services
    2. Facility-based services
    3. Home and community-based services
    4. Consumer directed services
    5. Family support
    6. Early intervention services
    7. Vocational rehabilitation & training
    8. Special education
    9. Health care
    10. Mental health and behavioral health

    RESIDENTIAL SERVICES
    Supported living and residential habilitation - This residential service provides what is needed to help an individual learn, keep or improve skills necessary to live in a home and community based setting that the individual controls and for which s/he has responsibility. This service includes assistance with activities of daily living (bathing, dressing, personal hygiene, eating, and meal preparation) and household chores essential to the health and safety of the service recipient. Budget management, help with attending appointments, and interpersonal and social skills building are examples of individual needs that can be met as part of the service.

    Family model residential support - This service provides supports to help an individual learn keep or improve skills necessary to live successfully in a family environment. In this model, the individual lives in the home of trained caregivers who are not family members.

    Medical Residential services - This service is provided in a residence in which everyone requires skilled nursing services in addition to services and supports to help the individual learn, keep or improve skills necessary to live in a community-based setting.

    DAY SERVICES, RESPITE SERVICES, AND PERSONAL ASSISTANCE
    Day services - Individualized services and supports to help an individual learn, keep or improve skills for living in a community-based setting; participating in community activities and using community resources; for getting and keeping a job; and participating in retirement activities.

    Respite Services - Services that provide care for an individual when caregivers are not able to provide care due to reasons such as sickness or death, or when caregivers need break from routine care-giving responsibilities.

    Behavioral Respite Services - Services that provide care for an individual who is experiencing a behavioral crisis for which it is necessary for the individual to temporarily go to a different place to live to resolve the crisis. Behavioral respite is provided in a setting in which the staff have received training in the management of behavioral issues.

    Personal Assistance - Assistance with activities of daily living (bathing, dressing, personal hygiene, eating and meal preparation); household chores necessary for health and safety; budget management; assistance with attending appointment, and interpersonal and social skills building.

    PROFESSIONAL SERVICES
    Behavioral Services - (1) Assessment and treatment of behavioral that presents a health or safety risk to the individual or others and/or behavior that significantly interferes with home or community activities; (2) determination of the settings in which such behaviors occur and the events which may result in behaviors; (3) development, monitoring and revision of crisis prevention and behavior intervention strategies; and (4) training of those who are responsible for the individual’s care in prevention and intervention strategies.

    Nursing services - Skilled nursing services based on a physician’s orders that are provided directly to the individual. Examples include nurses performing dressing changes, giving stomach tube feedings.

    Physical Therapy (PT) - PT includes evaluation, diagnostic and treatment services. These services may help a person increase his/her ability to move around in different settings, such as home, school, work and leisure activities. These services are provided to improve or maintain current functional abilities as well as prevent or minimize loss of function.

    Occupational Therapy (OT) - OT services include evaluation, diagnostic and treatment services. These services are provided to improve or maintain current functional abilities as well as prevent or minimize loss of function.

    Speech, Language and Hearing Services (SLH) - SLH services range from providing effective communication methods, such as sign language, to helping someone swallow safely. Audiologists address hearing problems and assess devices to help people hear well. These services help an individual improve or maintain current functional abilities and prevent or minimize loss of function.

    Orientation and Mobility Training - This service includes the assessment of a severely visually impaired individual’s ability to move independently, safely and purposefully in the home and community environment. Orientation and mobility counseling, as well as, training and education of the individual and caregivers responsible for assisting the individual are also part of this service.

    Nutrition Services - Evaluation and assessment of nutritional needs, nutritional counseling and education of the individual and of those responsible for food purchase, food preparation, or assisting the individual to eat. These services are provided by a licensed dietitian or nutritionist. These services are prescribed by a physician.

    EXPECTED OUTCOME
    • Improved living standard of the persons with MR.
    • Increase in the social and cognitive abilities of children with MR.
    • Increase in the social skills of children with MR.
    • Increased visibility of children with MR in different social settings.
    • Increase in the acceptance of children with MR by the families and community at large especially by non disabled children.
    • Improvement in the linkage with other developmental programmes (welfare, health, etc.,) for effective support in the process of mainstreaming children with MR.
    • Increased sensitivity and responsiveness of the primary education to children with MR

    RESEARCH PROGRAMMES

    PURPOSE

    The purpose of the AMIABLE AID’s research programme is

    • to develop new knowledge in the field of diagnosis, prevention, treatment, and amelioration of mental retardation and developmental disabilities
    • to provide support and facilities for a cohesive, interdisciplinary program of research in mental retardation and related aspects of human development
    • to support research facilities, administration, and development of a limited number of new research programs.

    RESEARCH OBJECTIVES

    BACKGROUND
    A major goal of the program is to prevent and ameliorate mental retardation. The degree of impairment associated with mental retardation varies in relation to the cause. Moderate and more severe mental retardation often results from problems that produce profound alterations in brain development and function. Diminished intellectual and adaptive capacity often can be traced to defective genes, ratogenic agents, toxic substances, infections, nutritional deficits, accidents, diseases, and other disorders causing brain damage. A larger proportion of cases of mental retardation are related to environmental or social conditions and disorders of unknown etiology. These complex problems require integrated, multidisciplinary approaches involving biomedical and behavioral sciences in a variety of settings.

    Several mental retardation syndromes have been identified, and new ones are being discovered. Each requires fundamental research into the underlying processes, as well as studies designed to meet the unique needs of the affected children. Therefore, the mission is to support research on the etiology, pathophysiology, epidemiology, diagnosis and evaluation, prevention, and treatment or amelioration of mental retardation.

    Research will cover a broad spectrum of scientific approaches ranging from laboratory research on fundamental processes of normal and abnormal development, to clinical and behavioral research in which persons with mental retardation are studied. It is viewed that major solutions to the problems of mental retardation may emerge from multidisciplinary collaboration involving a variety of approaches.

    As a result of the administrative and scientific approaches within the AMIABLE AID research Center, opportunities for breakthroughs will be enhanced.

    SCOPE OF THE RESEARCH PROGRAMMES
    AMIABLE AID has arranged to bring together scientists from a variety of disciplines to work within research center on the common problems of mental retardation; Consequently, studying a range of topics in basic and clinical or applied research on mental retardation (MR) which include:

    • Predictive and developmental studies of perinatal problems associated with MR: developmental studies of low birth weight, small for gestational age, preterm and neonatal sick infants; hypoxic or ischemic insults.

    • Neurodevelopment and longitudinal studies that characterize the neuropathological progress and inherent variability in conditions associated with MR in order to develop specific hypotheses about the initial (primary) abnormality, and to address the degree to which phenotypic variation relates to postnatal brain development.

    • Studies of learning disabilities, dyslexia, and attention deficit hyperactivity disorder.

    • Studies of language and communication in MR populations.

    • Studies applying imaging, electrophysiology, pharmacology, molecular biology, and behavioral science techniques to follow the developmental trajectories of different brain functions and their influence on developing cognitive and motor skills.

    • Studies of psychobiological processes in MR of conditions such as autism and Rett syndrome using methods of behavioral genetics, embryology and teratology, developmental neuroscience and psychophysiology; developmental psychopharmacology.

    • Studies of psychological processes in MR, including attention, cognition, information processing, perception, motor development, neurophysiology, affective, social, motivational, and personality factors.

    • Studies of autism and autism spectrum disorders: screening and diagnosis, etiology, neurobiology, genetics, pathophysiology, developmental course, medical, biological and pharmacological approaches, behavioral intervention.

    • Studies involving behavioral analysis: manipulations of interaction between behavior and environments of individuals with MR in infancy, childhood, adolescence, and adulthood to effect reduction in behavior problems, or to facilitate vocational training, social and self-help skills, and learning curves; use of social support networks; parent-child, sibling, peers, and family interactions over the life span.

    • Studies that develop and utilize measurement tools to assess cognitive and behavioral development: tests that highlight abilities and disabilities, including tests for specific subpopulations, such as Fragile X, inborn errors of metabolism, and Williams’s syndrome.

    • Studies that examine and evaluate residential, educational, and vocational settings throughout the life span: effects of behavior and adjustment of individuals with MR; learning and social behavior in these settings; adaptation to residential environments.

    • Studies of socio-ecological processes: individuals with MR from various cultural and ethnic groups in multiple settings (naturalistic observation); ethnographic research, life history reporting, and systematic observation of specific activities.

    • Studies of hyperaggressive, destructive, and self-injurious behavior in human and animal models, including pharmacologic treatment; stereotypic behaviors; lack of compliance of mentally retarded children in family and educational settings.

    • Studies of the epidemiology of MR: analytic and case-control studies of etiology; incidence and prevalence; follow-up over the life span (infancy to adulthood) for outcomes.

    • Studies of infectious diseases in the etiology, prevention, and treatment of MR; neurological, neuropathological, behavioral, and intellectual consequences of AIDS in children.

    • Studies that develop and apply methods and measures for screening and diagnosis, and/or identify children and infants at risk.

    • Studies that develop methods to better refine the definition of clinical phenotype in disorders associated with MR, with particular focus on characteristic component behavioral and cognitive features.

    • Studies involving early interventions (biological, behavioral, educational, environmental) for infants born at risk for MR; research into the process of early intervention strategies; follow-up of high-risk infants and children who are at risk due to biomedical conditions such as low birth weight and/or conditions of environmental deprivation;

    • Studies of intergenerational effects and outcomes for children whose parents have conditions associated with MR; effects of teen pregnancy on at-risk infant outcome.

    • Studies that examine and evaluate behavior and life styles that could affect mortality and morbidity.

    • Studies of toxicology and physical environmental factors in the etiology, treatment, and prevention of MR, including lead, mercury, and other heavy metals, and toxic wastes, such as hydrocarbons and polycarbonates (PCBs); developmental and behavioral teratology; fetal alcohol syndrome; neuroimmunological toxicology; subclinical levels of toxic agents and their effects on morphological and behavioral changes associated with MR.

    • Studies that develop and characterize animal models relevant to MR, e.g., gene knockout, gene repair, transgenesis, and homologous recombination; creation of conditional tissue-specific targeted knockout animal models; development and use of animal models that have specific relevance to disorders associated with MR based on clear neurodevelopmental, pathophysiological, genetic and/or functional homology; development and use of animal models to test existing medications and develop new psychopharmacologic medications that are safe and effective for patients with MR.

    • Studies of psychopharmacology: cellular and molecular mechanisms, pharmacokinetics, behavioral effects, medications used and treatment efficacies in different subpopulations of MR; dual diagnoses; rational drug development; combinatorial chemistry.

    • Studies of inborn errors of metabolism relevant to MR, including mitochondrial, liposomal and paroxysmal disorders as well as other disorders including, but not limited to, amino acid, organic acid, carbohydrate, cholesterol, nitrogen, catecholamine, and indolamine metabolism; molecular biology, pathophysiology, recombinant DNA technology, screening, applied clinical and experimental studies.

    • Studies of genetic/cytogenetic disorders associated with MR: research on prenatal diagnosis, particularly non-invasive methods during the early stages of pregnancy on prevalent genetic causes of mental retardation such as Down syndrome or Fragile X syndrome; research on isolation and characterization of fetal cells recovered from maternal circulation; research on rare genetic disorders associated with mental retardation.

    • Studies examining the mechanism by which genetic status affects the development, function, and dysfunction of the nervous system, particularly with respect to cognition and behavior.

    • Studies on Prenatal therapy of genetic and structural defects using metabolic, pharmacologic, nutritional, surgical, and other techniques.

    • Studies of the effects of malnutrition (protein, calorie, micronutrients) on intellectual, behavioral, social, and physical development; and malnutrition.

    • Studies that develop and utilize assistive devices (e.g., computer software) to help individuals with MR to learn and communicate.

    • Developmental and neurobiological studies relevant to MR: physiology, anatomy, chemistry, pharmacology, electrophysiology, molecular biology, plasticity, and structural and functional imaging, as well as behavioral science techniques employed to define the molecular, cellular, and biochemical bases of disorders associated with MR and to facilitate development of specific hypotheses about basic abnormalities that underlie these conditions.

    • Studies of cellular and molecular aspects of brain development: differentiation, synapse formation and modification, plasticity, tropic factors, and neurotransmitter function and modulation.

    • Studies of the molecular genetics of MR, including gene mapping, genomic imprinting, gene transfer, and gene localization, structure, function, regulation, and organization; genomics and proteomics. Clinical trials for the treatment, amelioration, and/or prevention of MR.

    • Genetic, molecular, behavioral, and bio-behavioral research and therapeutic approaches to Fragile X syndrome and Rett syndrome.