Welcome to the

Independent Living

Resource Center, Inc.

The ILRC is a nonprofit corporation of, by and for persons with disabilities serving

San Luis Obispo, Santa Barbara & Ventura Counties.

Consumer Handbook

Requests for alternate formats of this publication will be honored.

ilrc-trico.org

ILRC CONSUMER HANDBOOK

Table of Contents

What is Disability? 2

What is Independent Living? 3 Independent Living Centers 4

About The ILRC

Mission Statement 5

Services Available at the ILRC

Peer Support 5

Independent Living Skills 6

Information & Referral 6

Advocacy 6

Systems Advocacy 7

Personal Assistance 7

Housing Assistance 7

Communication Access Assistance Sign Language Interpreting 8

Assistive Technology Information 8

Service Eligibility 9

Consumer Rights 9

Consumer Responsibilities 9

Complaint and Appeal Process 10

Confidentiality 10

Civil Rights Legislation & People

with Disabilities 11

Language and Disability 13

Employment and Disability 13

Fun and Relaxation 14

Family and Friends 14

Transportation Options 15

Transportation Providers 16

What is Disability?

When seeking services, many people talk about limitations of mental or physical function, but do not identify themselves as a ‘person with a disability.’ That information may be a clue to their feelings about social stigma, cultural attitudes or personal resistance. Regardless, under the Americans with Disabilities Act (ADA), a federal law passed in 1990, a person with a disability is defined as an individual who has a condition limiting one or more substantial life activities. This means that a person who has such a condition is protected from discrimination under the law.

The social and cultural aspects of disability are very important. Independence and self-determination for people with disabilities have given rise to something called the Independent Living Movement. There are several hundred centers across the United States and in some foreign countries called Independent Living Centers (ILCs) or Centers for Independent Living (CILs). The movement began in the early 1970s in Berkeley, California, and became a ground swell of people who have disabilities working together to eliminate barriers to full participation in their communities and programs.

While the initial proponents of the Independent Living Movement were primarily people with physical disabilities, soon people with many kinds of disabilities became involved. For example, people who use American Sign Language identify themselves as a unique cultural group with a history, humor and pride. For additional information on Deaf Culture, Disability Pride, etc., check the internet or see our Resource Library.

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What is Independent Living?

Most American simply expect to have opportunities such as a choice in living arrangements, employment options, transportation, social and recreational activities, shopping, voting, dining and much more. For Americans with disabilities, however, barriers in our communities take away or severely limit those choices. Some barriers are obvious: A building entrance at the head of stairs and no obvious ramp or signage to the accessible entrance, thereby excluding a person using a wheelchair, a lack of sign language interpreters or captioning for people who are Deaf or hard of hearing; no available materials in Braille or on tape for people who are blind or low vision.

Independent Living means empowerment – making your own choices. Deciding how to live your life is something we all enjoy. Independent Living means exercising self-determination. It means having the right and the opportunity to pursue a chosen direction. We all learn from our choices. Living on your own or with your family, having an active social life, or having a job are all aspects of living independently: self-determination is the key.

Millions of Americans with disabilities live independently and fulfill vital roles in their communities. They are employers, employees, partners, parents, students, athletes, customers, voters and so on. The list is endless. In some cases the barriers they face have not been removed completely, but these individuals have successfully modified their environments and continue to advocate for barrier removal. Misunderstandings and prejudices about disabilities results in low expectations about what people with disabilities can do. These attitudes can be internalized and become the largest barrier to living independently causing low self-esteem, dependency and the lack of personal satisfaction.

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Independent Living Centers (ILCs)

Independent Living Centers are different from other organizations because ILCs have the fundamental and majority involvement of people who have disabilities. Policy decisions and program implementation have the Independent Living philosophy at the base and heart.

People with disabilities share their experiences and empower others by example. They have a deep commitment to helping other people with disabilities achieve the freedom and independence they desire.

The Independent Living Resource Center, Inc. (ILRC) serves a tri-county area along the Central Coast of California: Ventura, Santa Barbara, & San Luis Obispo counties. Our office locations and contact numbers are listed on the back of this booklet. Other ILCs, some with different names, serve other regions of California and the United States.

For information about ILCs in other regions of California or the nation, call your local Information and Referral specialist or visit one of these web sites: www.cfilc.org, www.calsilc.org or www.ilru.org.

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About The ILRC

Mission Statement

The Independent Living Resource Center, Inc., (ILRC) is a private, nonprofit corporation of, by and for persons with disabilities who reside or work in our service area. Our purpose is to assist and encourage individuals to achieve an optimal level of self-sufficiency while eliminating the architectural, communication and attitudinal barriers that prevent their full participation in the community.

Services Available at the ILRC

Peer Support

People with disabilities often meet people who do not understand the barriers to access and oversimplify the issues. ILRC’s consumers are able to meet with staff that have personal experience with disability, including staff who are Deaf. Our staff can assist in assessing and achieving personal goals related to independence, such as learning to adjust to an acquired disability or helping family face and support the growing independence of a family member who is maturing.

The barriers experienced by staff may not be exactly the same as those faced by others, but the principles of dealing with barriers, learning self-advocacy and communication about needs are sharable. The basis of the Independent Living philosophy is that people with disabilities are better equipped to assist others with similar challenges because they ‘have been there.’ A peer support group may also be a resource where people with disabilities can share information and solutions to problems they encounter.

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Independent Living Skills

ILRC offers a variety of resources that contribute to successfully living independently:

• Money Management – help with prioritizing your spending needs and referrals to budget “boot camps”;

• Benefits Referrals – help may come from referrals to SSI, SSDI, Medi-Cal, etc.;

• Benefits Planning – if you already receive Social Security benefits, ask about our BPAO program;

• Resource Information – know your community and how to use the local resources you find;

• Survival Skills – planning and preparing for natural disasters and other emergencies is critical;

• Transportation – know your options; and

• Self-Advocacy – learn how to clearly ask for the assistance you need.

Information & Referral (I & R)

When questions arise, consumers use the bilingual (English/Spanish) I & R staff to get information that will help. Individuals and organizations, agencies and businesses can get local, regional and national information regarding services and issues related to disability in the community. Each ILRC office has a resource library of reference materials and a consumer computer work station that can be utilized for information searches, writing a resume, etc. Call the I & R Specialist for more information.

Advocacy

While discrimination is illegal, sometimes equal access requires negotiation. ILRC works to insure access to public and private programs that are available to the general public. When individual rights are denied or abridged because of disability, our staff will work with you and the organization/business to identify a solution that provides you with reasonable access.

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Systems Advocacy

Accessibility and discrimination issues occur in many different places throughout a region, state or institutional structure. When several people encounter the same barrier(s), a system-wide approach to advocacy may be the most effective and efficient way to resolve an accessibility issue. Individuals are welcome to join our efforts to change the system and make living more accessible to all. ILRC facilitates action groups such as the Access Watch and Empowerment Teams. Local, state and federal legislators respond when people who can vote for them speak out and voice their concerns.

Personal Assistance

Independence does not mean doing everything by yourself. A Personal Assistant is someone who can help with routine tasks at home or work, such a dressing, toileting, transferring into and out of a wheelchair, cooking, feeding, and other activities of daily living. They may also provide reminders about medication, safety and other responsibilities.

ILRC staff makes referrals of potential personal assistants who have completed an initial application and screening process including written documentation and reference checks. Staff also offer instruction in recruiting, hiring and management of personal care assistants. A personal assistant under your direction can do the things you are not able to do for yourself.

Housing Assistance

Though the available and affordable housing in the tri-counties is at a stage of critical shortage, assistance is offered in applying for low-cost government housing certificates, seeking available living situations, resolving problems that may jeopardize existing living settings, as well as home maintenance and modification referrals where needed.

With a disability, your home may need a temporary or permanent modification so that it continues to be useable. Doors can be widened, ramps built, counters lowered, and bathrooms remodeled to make them more accessible and usable.

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Communication Access Assistance

Sign Language Interpreting

For people who are Deaf and hard of hearing, communications access and advocacy for that access are provided by ILRC staff. ILRC maintains a registry of qualified sign language interpreters and can refer oral or tactile interpreters and note-takers as well. Information about assistive listening devices and document translation is also available.

For individuals who have difficult-to-understand speech, referral to the Speech-to-Speech telephone relay services may provide the type of access assistance needed to achieve successful communication.

Assistive Technology (AT)

Specific information is available about Assistive Technology (AT) and adaptive equipment. Mechanical aids and durable medical equipment are devices that may be used at work and at home to promote independence. They range from simple grabbers to complex computer systems.

AT can enhance your life and help you achieve your goals, whether they are recreational, employment, activities of daily living, or community service. Assistive technology includes, among other things, wheelchairs, canes, walkers, reachers, scooters, a shower transfer bench, computer adaptations, modified telephones, electric door openers, flashing signals, talking clocks, etc. In other words, any device that allows you to perform those activities you want or need to do yourself.

An evaluation may be helpful to determine which AT devices best suit an individual’s needs. Those are done through referral to a third party. Talk with the AT I & R advocate in the ILRC office nearest you.

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Service Eligibility

Any individual with a disability that substantially limits independent living is eligible to receive services from the ILRC.

Fee for Services: The ILRC is a public benefit corporation funded by State and Federal grants, United Way, local grants, fund raising and private donations. There is no charge to consumers for ILRC services.

Information ILRC needs: Name, complete address, date of birth, type of disability and income status. Describe your needs, goals, the kind of services you may want.

How Services are provided: A consumer meets with a service provider for an initial interview. Goals are discussed. The service provider and consumer agree on a plan whereby those goals can be achieved. Specific objectives are selected, time lines identified and responsibilities established for both consumer and service provider. This is called an Independent Living Plan (ILP).

Consumer Rights

Each consumer receiving services from ILRC staff has the following rights which include, but are not limited to:

• Service without discrimination on the basis of race, religion, age, gender, national origin, sexual orientation, disability, or any other basis prohibited by law;

• Being treated with courtesy, dignity, and respect;

• Services provided without verbal (emotional), sexual or physical abuse or harassment;

• Services delivered in as timely a manner as ILRC’s work-load permits;

• Full and complete explanations of all appropriate service options;

• The right to appeal any decision ILRC has made on your behalf;

• The right to terminate services with ILRC at any time; and

• The right to view your individual service file record.

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Consumer Responsibilities

• Provide accurate, complete information;

• Follow through with all specific objectives in the ILP agreed to by you and the service provider, unless that process has been waived;

• Keep your ILRC service provider informed of changes to address, phone number, and other relevant personal information;

• Demonstrate appropriate behavior at all times;

• Schedule appointments – drop-in consumers are not seen unless circumstances are extraordinary;

• Appear for all scheduled appointments or to cancel or reschedule at least 24 hours in advance when conflicts occur; and

• Treat ILRC staff with courtesy, dignity, respect and refrain from any physical, sexual, or verbal (emotional) abuse or harassment.

Complaint and Appeal Process

There is an internal complaint or appeal process by which a consumer can address inappropriate treatment or services which they believe were not provided in a professional manner.

In addition, the Client Assistance Program (CAP) is available to address any problems or conflicts that might arise for you in the community. CAP can be reached by calling (805) 884-8423 Voice/Text, locally in Santa Barbara metropolitan area or, call toll free to (888) 963-0595 Voice/Text. For complaints regarding ILRC, a referral to an another ILC will be made.

Confidentiality

No employee or volunteer of ILRC may give any information regarding a consumer to any person or organization unless prior written permission is given by the consumer. This written permission will be specified as to the type of information authorized by the consumer for provision to specific individuals or organizations and be time limited.

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Civil Rights Legislation &

People with Disabilities

There is a long history of inequities for persons with disabilities. In the 1950s children with disabilities were often institutionalized or educated in segregated schools. Even today, some businesses and public programs are not ‘user-friendly.’ A person with a disability may encounter physical, program and attitudinal barriers. Examples of these are bathrooms, doorways, and stalls that don’t accommodate wheelchair users, voting booths that are not accessible and make no device accommodation for the non-sighted, lack of curb cuts, or ramps that are too steep to be used safely. Sign language interpreting, captioning or reader services may make program information useable for people with sensory disabilities.

Attitudes that stigmatize individuals with disabilities as incapable, or unintelligent based on how they look or sound deny success and self-fulfillment. Fortunately, there are now several laws that protect your rights as a community member and as a worker.

The Architectural Barriers Act (ABA) of 1968

The ABA requires access to facilities designed, built, altered, or leased with Federal funds. Passed by Congress in 1968, it marks one of the first efforts to ensure access to the built environment.

The Rehabilitation Act (1973)

The Rehabilitation Act of 1973, as amended, began a process of ensuring access when Federal funding supported programs and services across the nation.

Air Carrier Access Act (ACAA)

This legislation was enacted in 1986 to eliminate hindrances in air travel for persons with disabilities. All domestic air carriers and all airport facilities must be made accessible. The ACAA protects you from discrimination, ensures equality in travel opportunities and treatment, and makes the air carrier liable if they damage your wheelchair or other mobility aids.

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Fair Housing Act Amendments (FHAA)

This Act was designed to protect people against discrimination in housing. It is illegal to refuse to rent or sell property to someone based on that person’s disability or protected class status. It also requires landlords to allow their tenants to make modifications to dwellings at the tenant’s expense. The dwelling must return to the original status, if the landlord requests it, when the tenant leaves.

Americans with Disabilities Act (ADA)

The ADA requires program, architectural, transportation and communication accessibility that does not impose “undue hardship” for the business owners and government entities. The ADA also prohibits employer discrimination based on disability and makes it illegal to ask a job applicant if they have a disability.

Individuals with Disabilities Education Act (IDEA)

The Individuals with Disabilities Education Act (IDEA) of 1997 continued the requirements established by PL 94-142 for a free and appropriate education in the most inclusive environment. The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) aligns IDEA closely to the No Child Left Behind Act (NCLB), helping to ensure equity, accountability and excellence in education for children with disabilities.

Television Decoder Circuitry Act of 1990

The Television Decoder Circuitry Act of 1990 (Public Law 101-431) mandates the addition of closed-caption decoder chips in televisions 13’ or greater. It is a remarkably short piece of legislation - the key part is less than a page long. The law adds the following paragraph to the Communications Act of 1934:

“(u) Require that apparatus designed to receive television pictures broadcast simultaneously with sound be equipped with built-in decoder circuitry designed to display closed-captioned television transmissions when such apparatus is manufactured in the United States or imported for use in the United States, and its television picture screen is 13 inches or greater in size.”

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Language and Disability

Our language evolves with increased awareness and sensitivity to the impact that words can have on attitudes and the impact of the media on our self-esteem. The language of disability has evolved in relation to the awareness we have that individuals who have disabilities are as equal contributors and partners in our society as anyone without a disability. Some individuals are born with a disability, others acquire a disability or illness or experience trauma in accidents at work, or at war. Some disabilities come about just because we are living longer and growing older than previous generations. Avoid using ‘victim’ or ‘sufferer’ – it presumes the person is in agony or perpetually helpless. Choose neutral descriptions versus negative ones...

NEGATIVE

wheelchair bound,

the handicapped,

handicap parking

NEUTRAL

wheelchair user,

people with disabilities,

accessible parking

Employment and Disability

There are federal and state organizations within the community that can help train or retrain you for work. If you are recently disabled unable to return to the job you had prior to your disability there is re- training resources and support available. Contact your local Vocational Rehabilitation Office or One Stop Career Center for more information.

Employers need reliable, qualified workers with or without disabilities. In fact, under the ADA, employers who employ 15 or more people have an obligation to give you an equal chance at any job that you are qualified to do.

They also have an obligation to make reasonable accommodations at your work site, such as raise your desk, lower the shelves, or make your work area larger. ILRC can assist with mediation with employers on disability-related or accommodation issues, provide referrals to support programs and employment resources.

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Fun and Relaxation

We all need forms of recreation to relax, have fun and feel better about ourselves and about life. People with disabilities enjoy many of the same forms of recreation as non-disabled persons, i.e., playing tennis, billiards or rugby, going to the theater or symphony, playing computer games, searching the Internet, bicycling, skiing, swimming, hang gliding, bowling, and weight lifting. Frequently public places of interest, such as parks, libraries, art galleries, botanical gardens, etc., can also be added to this list. Depending on your disability, you might need adaptive equipment to partake in these pleasures..

Family and Friends

Family and friends and other support systems in our communities are vital aspects of everyone’s life, including the lives of people with disabilities. They enrich our lives, provide companionship and help us through the tough times.

Parenting with a disability can be a challenge. Although you may need to do things in a nontraditional way, there are still plenty of ways to express love and demonstrate caring to your children. Support from other parents with disabilities can make a big difference. Young people are adaptable and can generally accept having a parent with a disability as long as they understand it. Children may need information about your disability, and they may need to express feelings about it from time to time.

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Transportation Options

Many people with disabilities are able to drive, although some require modifications to their vehicle. Modifications vary according to personal preference and physical need, including adding hand controls, power steering, or cruise control to the vehicle – or the purchase of a modified van with a lift.

Public transportation is an inexpensive and good way for getting around locally when there is a bus stop close by. The Americans with Disabilities Act (ADA) requires that where public transportation exists, it must be wheelchair accessible. Public transportation includes lift-equipped buses, and Dial-A-Ride (paratransit) services for those unable to use fixed-route buses.

Each city is responsible for its own public transportation, thus services vary from place to place. Call the following numbers for the current schedules and to inquire about getting special rates for seniors and people with disabilities.

A list of providers of Fixed Route and Paratransit transportation services in the Tri-Counties region can be found on page 16 of this handbook.

*Phone numbers are Voice only unless indicated otherwise.

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Independent Living

Resource Center, Inc.

Locations:

Santa Barbara County

ILRC Headquarters

423 West Victoria Street

Santa Barbara, CA 93101

(805) 963-0595 Voice/Text

(805) 963-8265 Text

(805) 963-1350 Fax

327 E. Plaza Drive, Suite 3A

Santa Maria, CA 93454

(805) 925-0015 Voice/Text

(805) 925-5892 Text

(805) 349-2416 Fax

Ventura County

1802 Eastman Avenue, Suite 112

Ventura, CA 93003

(805) 650-5993 Voice/Text

(805) 650-0669 Text

(805) 650-9278 Fax

San Luis Obispo County

1150 Laurel Lane, Suite 184

San Luis Obispo, CA 93401

(805) 593-0667 Voice/Text

(805) 549-7423 Fax

Open Monday to Friday

9 AM to Noon & 1 to 5 PM