Community Living

Communit

y and

Independe

nt Living

and

People

with

Disabilitie

s

A little history related to persons with disabilities…

• The Alabama legislature declared them "a menace to the happiness...of the community."

• Texas law mandated segregation to relieve society of the "heavy economic and moral losses arising from the existence at large of these unfortunate persons."

• In Pennsylvania, disabled people officially were termed "anti-social beings;"

• In Washington, "unfitted for companionship with other children;" in Vermont, a "blight on mankind;" in Wisconsin, a "danger to the race;" and, in Kansas, "a misfortune both to themselves and to the public."

• In Indiana, we were required to be "segregate[d] from the world;" a Utah government report said that a "defect wounds our citizenry a thousand times more than any plague;" and, in South Dakota, we simply did not have the "rights and liberties of normal people."

The United States Supreme Court

In an opinion by Justice Oliver Wendall Holmes upholding the constitutionality of a Virginia law authorizing the involuntary sterilization of disabled persons, ratified the view of disabled persons as "a menace." Justice Holmes juxtaposed the country's "best citizens" (nondisabled persons) with those who "sap the strength of the state" (disabled persons), and to avoid "being swamped with incompetence," ruled

"It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind."

Current Trend TowardCommunity Living

• Fewer People Living in State Institutions

• Closure of State Institutions

• Lucille C. and Elaine W. vs. Olmstead

Fewer People Living in State Institutions

1977 149,892

2000 47,374

Braddock, D., Hemp, R., Rizzolo, M., Parish, S., and Pomeranz, A. (2002). The State of States in Developmental Disabilities 2002 Study Summary. Denver, Colorado: Coleman Institute for Coleman Institute for Cognitive Disabilities and Department of Psychiatry, The University of Colorado.

Closure of State Institutions

1970 to Present

125 Closures in 37 States

Braddock, D., Hemp, R., Rizzolo, M., Parish, S., and Pomeranz, A. (2002). The State of States in Developmental Disabilities 2002 Study Summary. Denver, Colorado: Coleman Institute for Coleman Institute for Cognitive Disabilities and Department of Psychiatry, The University of Colorado.

History of Independent Living

• People with disabilities should have the same civil rights, options, and control over choices in their own lives as do people without disabilities

• Principle of Normalization --Wolf Wolfensberger

• Civil Rights Movement• Self-help movement• Demedicalization movement• Consumerism

Civil Rights Laws1964: Civil Rights Act: prohibits discrimination

on the basis of race, religion, ethnicity, national origin, and creed -- later, gender was added as a protected class.

1968: Architectural Barriers Act: prohibits architectural barriers in all federally owned or leased buildings.

1970: Urban Mass Transit Act: requires that all new mass transit vehicles be equipped with wheelchair lifts.

1973: Rehabilitation Act: particularly Title V, Sections 501, 503, and 504, prohibits discrimination in federal programs and services and all other programs or services receiving federal funding.

1975: Developmental Disabilities Bill of Rights Act: among other things, establishes Protection and Advocacy (P & A).

1975: Education of All Handicapped Children Act (PL 94-142): requires free, appropriate public education in the least restrictive environment possible for children with disabilities.

1978: Amendments to Rehab Act: provides for consumer-controlled centers for independent living.

1983: Amendments to Rehab Act: provides Client Assistance Program (CAP), an advocacy program for consumers of rehab and independent living services.

1985: Mental Illness Bill of Rights Act: requires protection and advocacy services for people with mental illness.

1988: Air Carrier Access Act: prohibits discrimination on the basis of disability in air travel provides for equal access to air transportation

1988: Fair Housing Amendments Act: prohibits discrimination in housing against people with disabilities and families with children.

1990: Americans with Disabilities Act: provides comprehensive civil rights protection for people with disabilities

Olmstead vs. L.C. (1999)

The landmark 1999 U.S. Supreme Court decision in Olmstead v. L.C. held that unnecessary segregation of people with disabilities in institutions is a form of discrimination that violates the 1990 Americans with Disabilities Act (ADA).

The decision highlighted the need for states to provide community-based services to meet the needs of all individuals who can benefit from living in the community.

Raising dependency

4,59% 32,21%

Between 6 and 64 Older than 64

[INE, 2000]

• Disability rates rise with age

“Independent Living means that we demand the same choices and control in our every-day lives that our non-disabled brothers and

sisters, neighbors and friends take for granted. We want to grow up in our families, go to the neighborhood school, use the same bus as our

neighbors, work in jobs that are in line with our education and interests, and start families of our own” Adolf Ratzka, 1992.

“Nothing about us without us”, David Werner, 1998

[Independent Living]

Independent Living

Raising dependency• Where do elderly people want to live?

At home (78,8%)

With relatives (14%)In an institution (2,5%)

[SESPAS, 2004]

• What is the most beneficial situation?

“Institution residents have many more serious health problems than elderly people who live independently, and they have much less access to the resources that would allow them to continue living independently with such health problems.” [SCPON, 1994]

Three things people with disabilities

tell us about community living

“I do not want to live in some one else’s community living project”

“I want to live in my own home not somebody else’s home”

“If I need personal assistance then I want to determine how much I get, when I get it, and where I get it!

Independent living implies performing Daily Living Activities (DLA) :– Personal care: Waking up and going to bed, feeding, bathing, using the

restroom

– Home tasks: Cooking, shopping, cleaning

– Communication: Picking up the phone, Opening the door when the bell is ringing, etc.

– Entertainment: Listening to music, watching TV

– Safety: Facing emergency situations

Most housing is designed for young, active and mobile people

In the US, more than one half of people with disabilities between 6 and 64 (70% for 65+) face problems when performing daily living activities

(DLA).

In the US, more than one half of people with disabilities between 6 and 64 (70% for 65+) face problems when performing daily living activities

(DLA).

Independent Living and Autonomy at Home

[INE, 2000]

Barriers to Community Services

• Nature of disability• Lack of income support entitlement• Lack of affordable housing• Lack of competitive and supported employment• Lack of access to appropriate health care• Fragmented services• Fiscal barriers• Stigma and discrimination• Staffing shortages• Lack of transportation• Lack of access in rural areas

Successful Strategies for Community Services

• Case management• Services in the LRE• Rehabilitation services• Crisis care services• Consumer self-help,

self-advocacy, consumer operated programs

• Family self-help and advocacy

• Housing• Income, education,

employment• Health care• Integrated community

services

Confident Project

Independent Living Centers

• The League for the Blind and Disabled

• Indianapolis Resource Center for Independent Living

• Independent Living Center of Eastern Indiana

“Independent living is a lifestyle,with possibilities and limitations

common to everyone.”

“When people with disabilities can live on their own, with the same rights and

responsibilities of others.”

Judith HeumannDisability Advisor, World Bank

“To us, independence does notmean doing things physically alone.

It means being able to make

independent decisions.

It is a mind process not contingentupon a ‘normal’ body.”

“I prefer to think of the movement as an interdependent living

movement rather than an independent

living movement.”

Gini Laurie, 1988

Transition Planning

Parent Perspectives

• Want to be assured of their child’s lifelong security

• Need to develop a vision of a person’s home as an adult.

Consumer Characteristics

• Most have the same hopes and fears as individuals without disabilities

• Often ill-prepared to face challenges of community living (fiscal, social, safety)

• Support persons may hinder independence and self-determination

Support

• Can be broadly defined as “an array, not continuum, of services, individuals, and settings that match the person’s needs”

Independent Living Skills

How Learning and Attention Difficulties Impact Life Skills

• The young woman who spells poorly will have difficulty filling out forms at her doctor’s office.

• The young man who has trouble reading will find it challenging to decipher the washing machine directions at the local laundromat.

• The fellow who is disorganized is likely to lose his keys over and over again.

• The woman who is distracted may start to clean the living room and fail to finish when she picks up a magazine from the floor and stops to read an article that catches her eye.

For teens with LD and ADHD…

• meal planning and preparation • money management • housekeeping • self-care (e.g., hygiene, medical care) • planning leisure time and activities • getting around (transportation)• Orientation to college• Choosing a roommate

Other skills

• Self-advocacy/assertiveness training• Stress management• Communication• Social skills/relationships• Home management• Locating a home (apartment hunting/funding)• Shopping• Other topics as identified by the consumer • Independent Living Skills Test

Supported Living Services• Adaptive and therapeutic equipment• Attendant care or personal assistance• Consultation• Home modifications• Homemaker services• In-home training• Recreation and leisure• Roommates for live-in support• Start up grants• Support broker or personal agent• Supported living community resource• Transportation

Personal Assistance Services

• Assistance with personal care activities• Assistance in moving around the home and

community• Assistance with home maintenance• Help in caring for infants and children• Aid in cognitive life management• Assurance of personal and home security• Assistance in communication services, such as

interpreting or reading

What to consider for independent living and transition

• Types and location of housing

• Choosing one’s living companion

• Promoting home ownership

• Financing for housing

• Individualized and flexible supports

• Financing for supports

Community Residential Options

• Group homes

• Supervised home or apartment

• Adult foster care

• Personal care home

• Board-and-care home

• Nursing home

• Own home

Nonresidential Support Services

• Crisis intervention services

• Respite care

• Cash subsidies

• Service coordination (case management)

Key Areas of Curriculum Content

• Planning and preparing meals

• Self-care, bathing, hygiene

• Cleaning and care of the home

• Cleaning and care of clothing

• Telephone use

• Leisure activities in the home

• Safety procedures

• Time management and scheduling of completion of activities

Social Validation

• Refers to the degree to which behavior change is socially meaningful as assessed by the reactions of others or by comparison with the performance of others.

Social validation questions

• Is the student able to plan a healthy diet?

• Can the student prepare meals in a safe manner?

• Can the student safely store and handle food?

• Is the student able to keep the home clean, sanitary, and odor-free?

• Is the student able to operate equipment in the home safely

• Can the student occupy his or her free time?

• Does the student know how to respond in an emergency or when the smoke detector sounds?

• Does the student know how to call for help using 911?

• Does the student have any friends to spend free time with?

• Does the student have acceptable personal cleanliness and hygiene?

Questions cont.

• Can the student dress him- or herself?

• Can the student care for his/her own toileting needs?

• Can the student manage his/her own time effectively

• For any of the preceding questions to which the answer is “no”, what type of instruction or support needs to be provided?