Personal Autonomy for people with disabilities

• The topic is an analysis of the processes of promoting personal autonomy of people with disabilities (PCD) within the family, referenced as T2 MF 1452_3.

Introduction

• The term "handicap" disappeared in 2001 with CIF (WHO), replaced by "disability."
• Addressing the different types of disability involves working from the individualization of each user
• Individualization involves considering their abilities and the supports they need.
• The influence of the family on the development of PCD is also an important aspect.

Levels of Autonomy and Support

• According to Law 39/2006, "Autonomy" means the capacity to control, face, and take personal decisions.
• Decisions are considered on how to live according to one's own norms and preferences, and to develop Activities of Daily Living (ABVD).
• People need to learn different activities (AVD) and behaviors to develop with autonomy.
• Training programs for skills related to AVD are used.
• When providing support, promote autonomy and reduce or eliminate barriers, while respecting rights.
• Laws and policies should be based on the Principles of:
• Equality of opportunities
• Normalization
• Right to an independent and autonomous life
• Participation and integration/inclusion
• Law 39/2006, the SAAD system has been seen.

Law 39/2006 Challenges

• Addressing the needs of individuals requiring support to develop AVD.
• Helping people achieve autonomy and fully exercise their rights.
• Revise the traditional care system to ensure the adequate provision of care to those who need it.
• The SAAD (System for Autonomy and Attention to Dependency) and its services in Cantabria are:
• Early care service
• Home telehealth service
• Home help service for dependent people
• Day care center
• Psychosocial rehabilitation center
• Daytime care, occupational center
• Night center service
• Permanent residential care service
• Financial assistance for personalized assistance
• Financial benefit linked to the service
• Financial assistance linked to non-professional care in situations of dependency

Personal Autonomy

• Disability is a restriction or absence of the capacity to perform an activity in a "normal" way, due to a deficiency
• Deficiency is defined as any loss or abnormality of a structure or function (psychological, physiological, or anatomical).

Determinants of Dependency

• Existence of a limitation (physical, psychic, or intellectual) that diminishes certain capacities of the person.
• Need for care assistance from a third party.
• Incapacity of the person to perform AVD by themselves, requiring use of resources and materials.

Causes of Limitations

• PCD face limitations when performing AVD.
• Some limitations can be caused by:
• Characteristics of the person: resulting from illness, accident, etc.
• Characteristics of the environment: environmental barriers, communication issues, etc.

Levels of Autonomy

• The level of autonomy and its quality are related to:
• Characteristics of the PCD.
• Characteristics of the environment
• Characteristics of the family
• Three levels of autonomy exist:
• Total autonomy: PCD achieves total autonomy with help and support.
• Partial autonomy: requires more help and support in a large part of AVD.
• Limited autonomy: : needed in most daily activities and functions, with autonomy only in some areas

Royal Decree 1/2013

• Rights of PCD
• Social Inclusion
• Comprehensive Care

Analyzing Functionality

• To work with each family, an analysis of the situation to identify relationships
• The analysis looks at the habits and actions of their members to determine their situation.

Family Types

• Functional
• Satisfies the needs and promotes autonomy.
• Addresses new situations and changes.
• Equal interactions of respect and affection
• Roles are flexible.
• Fosters positive self-esteem.
• Promotes contacts with groups and organizations.
• Dysfunctional
• Does not promote satisfaction of needs.
• May have safety, affection, and development deficits.
• Does not favor vital processes and skills.
• Poor organization of functions.
• Conflicts are not solved.
• Social skills are not developed.

Analyzing Functionality

• The analysis should include:
• Characteristics of the family
• Socioeconomic resources
• Structure and type of family
• Evolutionary stage of the family
• Family needs
• Study of the needs of all its members: primary needs (information, support, resources, specialized attention, physical needs, etc.) and secondary needs (psychological, economic)
• Family Functions
• Development, socialization, safety and support, affection
• Family relationships
• Satisfactory or non-satisfactory

Assessment Tools

• These tools help understand family dynamics and can include:
• Observation
• Interview
• Apgar family

APGAR Family

• The main purpose is to help identify any possible problems in the family that are affecting the development of the family.
• Professionals are provided a vision of how children see their environment.
• It measures:
• Adaptability: Ability to solve problems.
• Partnership: Implication of the members. - Growth: Physical maturity & social conduct.
• Affection: Love and care in the family
• Resolve: Dedication of time to other members for physical, emotional, and or economic needs.

APGAR Interpretation

• The sum of the five scores results in the following classification:
• Functional family: Total score 7-10, indicates good family functioning with healthy and adequate relationships.
• Dysfunctional family: Total score 4-6, indicates some difficulties in family functioning that might need attention.
• Severely dysfunctional family: Total score 0-3, reflects very low satisfaction with the family, requiring urgent intervention.

Other Assessment Tools

• Genogram

Genogram

• Used in family meditation.
• A graphic representation of basic family information from at least two generations.
• Considers the family's structure, demographics, and relationships.
• Provides a "snapshot" of family dynamics (problem, context, evolution).

Genogram Symbols

• Charts showing how to represent relationships, genders, medical conditions etc in genograms

Applying Intervention

• Why is it necessary to plan the intervention?
• Planning is needed to analyze:
• Whether aid is effective
• Whether personal needs are being met
• If the person's autonomy is being promoted

How to Plan

• Steps to take include:
• Analyze the person's capacities: to know the functionality and the needs in the ABVD
• Design and plan actions: take into account the methodology, the aids and the resources
• Evaluate the intervention: to see the effectiveness and make the appropriate changes

Sensitization

• The reasons why it is an important action, the target population of sensitization
• Individual differences and characteristics
• Functional diversity/disability
• Importance of eliminating barriers and being more accessible
• Contributes to equality and adaptation
• Important to work to reduce the risk of family overload, prevents burnout syndrome.

Intervention Tools

• Modify interventions within dysfunctional families
• Tools are used when organization and relationships are modified.
• Social behaviour refers to how people act in their social environment.
• types of conduct:
• Conscious and unconscious.
• Voluntary and involuntary.
• Public and private.

Functional Analysis

• Evaluation of conduct to look at factors associated with maintenance of what is seen either negatively/disruptively.

Reinforcement

• A technique linking behaviors with environmental events.
• Events include previous factors from which one is influenced, or subsequent.
• Example: If the environment is comfortable and work is being done, if it becomes unpleasant, one may harm oneself.
• 2 kinds:
  • Positive
  • Negative

Positive Reinforcement

• Provide a reward or a positive outcome.
• Such reinforcement increases the desired behavior's frequency, length, and/or depth.
• Effective and will seek to support main carer too.
• Preventive
• Rehabilitating

Negative Reinforcement

• Designed to raise desired conduct by removing one stimulant.
• Reassurance is not to be confused with punishment.

Barrier Elimination

• Consider the possibilities for acton and for resources.
• Accessibility refers to what materials are available.
• Different standards are in existence.

Key Concepts

• Communication via Braille, large print etc
• Discrimination issues
• Universal design
• Adjustments