introductory exercises - new hampshire

ABCs of InformAtIon And referrAl

page 346 | alliance of information and referral SyStemS 2015

Introductory ExercisesHow would you define a ‘disability’? What do you think are the main types of disabilities?

You are told that your child may have intellectual disabilities. What questions would you ask a doctor?

What types of programs or services might be of most interest to a person with a disability?

SECTION 17: Special populationS | Serving PeoPle with DiSabilitieS

alliance of information and referral SyStemS 2015 | page 347

”Disability is the most equal opportunity minority: anyone can join at any time, and with time, most people will.”

Ed Roberts, a person with a significant disability, was told by a vocational rehabilitation (VR) counselor that he would never be able to hold down a job. After a successful career in human services, Ed later became the Director of the California Department of Vocational Rehabilitation... where that VR counselor was employed.

It is estimated that up to 18% of the US population has an impairment that is a substantial limitation to one or more daily life activities, and can consider themselves ‘persons with disabilities’.

There are many ways to classify and define the different types of disabilities. The U.S. Department of Education uses the following classification system:

� People with cognitive or intellectual disabilities: impairments that affect thinking, learning, and remembering

� People with mental/emotional disabilities: impairments that affect moods and feelings

� People with physical disabilities: impairments that affect mobility, manual dexterity, and purposeful movement

� People with hearing disabilities: impairments that affect the ability to hear

� People with vision disabilities: impairments that affect the ability to see

� People with multiple disabilities: impairments listed above that co-occur

See the Person, not the Disability



The most common, and certainly the most far-reaching definition of disability, comes from the Americans with Disabilities Act (ADA). This far-reaching legislation, designed to prevent discrimination on the basis of disability and mandate public accommodation, is both broad and specific.

Within the Act, the term “disability” means, with respect to an individual: “(A) a physical or mental impairment that substantially limits one or more major life activities of such individual; (B) a record of such an impairment; or (C) being regarded as having such an impairment.”

Major life activities include, but are not limited to:

� caring for oneself

� performing manual tasks

� seeing

� hearing

� eating

� sleeping

� walking

� standing

� lifting

� bending

� speaking

� breathing

� learning

� reading

� concentrating

� thinking

� communicating

� working

A major life activity also includes the operation of a major bodily function, including, but not limited to, functions of the immune system; normal cell growth; or digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.

Another major definition of disability comes from the Developmental Disabilities Assistance and Bill of Rights Act of 2000 (DD Act):

“In general, the term ‘developmental disability’ means a severe, chronic disability of an individual that:

� is attributable to a mental or physical impairment or combination of mental and physical impairments;

� is manifested before the individual attains age 22;

� is likely to continue indefinitely; and



� results in substantial functional limitations in 3 or more of the following areas of major life activity:

� self-care � receptive and expressive language � learning � mobility � self-direction � capacity for independent living � economic self-sufficiency

and reflects the individual’s need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are individually planned and coordinated.”

Another important definition is geared strictly to Social Security eligibility:

� An individual cannot do work that he/she did before

� Social Security decides that the individual cannot adjust to other work because of the individual’s medical condition(s); and

� The individual’s disability has lasted or is expected to last for at least one year or to result in death.



Attitudes towards disabilities: A brief overviewDisabilities of all types have been part of humankind since the dawn of time.

While some societies welcomed and cared for their family members who needed additional help, many did not. Until the early 1800s, some people with disabilities lived with their families in the community, but many were abandoned to a life of begging on the streets, or even euthanasia. Many communities passed what are now known as “Ugly Laws”: for example, the Chicago Municipal Code included an ordinance that provided:

“no perSon who iS diSeaSed, maimed, mutilated or in any way deformed So aS to be an unSightly or diSguSting object or improper perSon to be allowed in or on the public wayS or other public placeS in thiS city, or Shall therein or thereon expoSe himSelf to public view, under a penalty of not leSS than one dollar nor more than fifty dollarS for each offenSe.”



Because of such legislation and attitudes, but also out of a desire for more relatively humane treatment and living conditions, institutions for “the disabled” were established. Work farms, county homes, insane asylums, and ‘state schools’ proliferated in many countries by the 1960s. By that time, many had degenerated into human warehouses with abominable conditions, including unregulated human experiments, forced sterilization, and other medical procedures.

Prior to the mid-1970s, educational institutions were free to ban individuals with disabilities from attending schools. Very few public buildings had any provision for accessibility, and it was extremely rare to find an accessible public transportation system. Employers could make employment decisions based on disability alone, without regard to competence or ability. Landlords could reject potential tenants simply because the person had a disability.

By the 1970s, the movement toward deinstitutionalizing people with disabilities began with many of the most deplorable institutions being closed.

Societal attitudes toward disability have changed a great deal over the last 30 years, along with the introduction of legislation that provides protection against discrimination and requirements for public accommodation. However, it remains necessary to monitor and advocate in order to ensure that legislation is consistently being followed.

These changes in attitudes and legislation were brought about by a broad movement in which people with disabilities themselves led the way.

The disability rights and independent living movements emphasize consumer control – the idea that people with disabilities are the best experts on their own needs, having crucial and valuable perspectives and deserving of equal opportunity to decide how to live, work, and take part in their communities, particularly in reference to services that powerfully affect their day-to-day lives and access to independence.

Now people with even the most significant disabilities are able to live independent lives and be active participants in their communities, just like anyone else.

Now people with even

the most significant

disabilities are able

to live independent

lives and be active

participants in their

communities, just like

anyone else.



Perceptions of Disability

Select whether each statement is either True or False (answers on page 365)

TRUE FALSE

1. Wheelchair users are paralyzed and, therefore, are confined to their chairs.

2. Some deaf people can speak.

3. People with disabilities live very different lives than non-disabled people.

4. Blind people have exceptional hearing.

5. Disabled people can raise non-disabled children.

6. Many hearing impaired people can read lips.

7. Deaf persons do not appreciate music, theater, movies, etc., because they cannot hear.

8. People with disabilities experience a wide range of emotions and feelings.

9. The only way we communicate with one another is through talking and listening.



Specific services for people with disabilitiesDifferent areas of the country have the same or similar resources available, but they often vary by location, name, which agency provides them, eligibility requirements, etc. I&R Specialists need to know the types of resources commonly accessed by people with disabilities, and then take on the responsibility of finding the equivalent resources available in a given area.

Most people with disabilities who use I&R services have goals related to increased independence in a significant life area. The most common are: self-advocacy and empowerment, communication, mobility/transportation, community-based living, educational and vocational services, self-care, information access/technology, personal resource management, relocation from a nursing home or other institution, community/social participation, health care, and assistance in applying for social security and other financial resources.

Specific resources that people with disabilities commonly access through I&R services to meet these goals include:

� Sources for financial and medical assistance such as Social Security, Medicaid, Medicare, assistance in paying for medications, home delivered meals, financial assistance

� Sources for in-home assistance such as personal care services, chore services, homemaker services, cleaning

� Sources for obtaining assistive technology such as accessible vehicle sales; repair, modification, loan or purchase of durable medical equipment; hearing and vision resources; prosthetics; vision and hearing services

� Sources for case management assistance, counseling, peer support groups, developmental centers, domestic violence, Area Agencies on Aging

� Sources relating to legal and advocacy assistance such as adult or child protection, nursing home ombudsmen, protection and advocacy systems, ADA and Fair Housing resources

� Sources related to housing such as low-income housing programs, energy assistance, accessibility modifications, utility assistance

� Sources for obtaining medical services such as low-income health clinics, pro bono dental clinics, state Medicaid programs

CILs are highly skilled

at helping people with

disabilities navigate

the complicated,

confusing and

sometimes

contradictory service

systems.



� Sources for crisis assistance, including emergency hotlines, mental health services, substance abuse treatment

� Transportation services, both medical and non-medical

and organizations and agencies that specifically provide services to people with disabilities, such as vocational rehabilitation, services for people who are deaf or blind or both, programs that serve individuals with developmental disabilities and mental health issues, and Centers for Independent Living.

Centers for Independent LivingOften referred to as CILs, Centers for Independent Living are found throughout the United States and Canada. A CIL is a consumer controlled, community-based, cross disability, nonprofit agency that is designed and operated within a local community by individuals with disabilities and provides an array of independent living services.

(Consumer-controlled means that at least 51% of staff members are persons with disabilities; and at least 51% of each CIL’s Board of Directors are also persons with disabilities. Cross-disability means that a CIL provides services to people with any type of a disability.)

All CILs provide four core services:

1. Information & referral 2. Independent living skills training 3. Individual and systems advocacy 4. Peer counseling



In addition, many CILs also offer assistance in obtaining assistive technology, transportation services, personal assistance services, housing and home modifications, recreation, vocational programs, and other individualized services designed to increase and maintain independence, such as relocating from a nursing home to a residence in the community.

CILs are highly skilled at helping people with disabilities navigate the complicated, confusing and sometimes contradictory service systems. CILs typically collaborate with many other community and disability-related agencies, organizations, and resources, which makes them uniquely positioned to be a comprehensive I&R Specialist’s secret weapon!

A comprehensive listing of contact information for CILs is found at the Independent Living Research and Utilization (ILRU) website at www.ilru.org/html/publications/directory/index.html.

Medicaid Home and Community-Based Waiver ServicesMost of the major services for people with disabilities are funded through Medicaid, which is often funded at roughly 70% federal dollars and 30% state funds. Medicaid services are administered by a state agency.

States generally offer Medicaid through either institutional care, or through a Medicaid Home and Community Based Services waiver. When states apply for a waiver, they specify what services other than institutional care will be made available. This means that waiver services vary from state to state and, in some states, Medicaid Home and Community-Based Services (HCBS) are accessed through county governments rather than through a single state agency such as the Department of Elder Affairs or the Department of Human Services.

Typically the State Medicaid program will deliver waiver services through contracts with private provider agencies and non-profit organizations. Most states also have a self-directed option, which allows eligible individuals to directly hire, train and manage the specific services they require.

Legislation was passed in January 2014 which will begin altering the waiver application process, what populations are covered by particular waivers, and the implementation of Medicaid HCBS waivers over the next several years, under the current Medicaid system, adults with physical disabilities usually get their Medicaid funded services through an Aged and Disabled Waiver (A&D Waiver).



A&D Waiver services include personal assistance services such as chore and homemaker services, attendant and personal care services, companion services, durable medical equipment, case management or service coordination, medical transportation, emergency services, and home modifications.

Adults and children with developmental/intellectual disabilities access services through a Developmental Disabilities Waiver (DD Waiver). Some states serve people with traumatic brain injuries (TBI) through the DD Waiver, while others have a specific TBI Waiver. Typical service components of a DD Waiver include adult day health care, assistive technology, caregiver training and education, case management, chore services, consumer-directed community supports, day training and habilitation services, emergency assistance, homemaker services, in-home family support services, modifications to the home or vehicle, respite care, supported employment services, supported living services, and transportation services.

States have considerable latitude over what services are offered under Medicaid Waivers, and many offer additional waiver programs for older adults, children and adults with chronic illnesses and disabilities, people with mental illness, traumatic brain injuries, and other specific conditions. As a result of the new legislation passed on Medicaid HCBS settings in January 2014, states will begin combining various populations under a reduced number of waivers over the next several years.



Disability Etiquette � Relax. If you don’t know what to do or say, allow the person

who has the disability to help put you at ease. They have more experience with this situation.

� Speak directly to the person with the disability.

� If it seems like help may be required, offer assistance by introducing yourself and asking in a matter-of-fact manner (“Hi, my name is _________________. May I help in any way?”) Don’t insist on helping. Providing assistance before it is needed is considered rude and can sometimes be dangerous.

� Accept the fact that the disability exists.

� Appreciate what the person can do.

� Do not call people without a disability “normal”.

� Explore your mutual interests in a friendly way.

� Watch for architectural barriers and hazards such as ramps which are too steep, inadequate lighting, overhanging branches, or slippery walking surfaces.

� Don’t forget to laugh together.

Remember, if you have a negative experience with a person with a disability, do not generalize it to everyone else with a disability because people have very different attitudes about their disabilities. That person may be reacting to a certain situation, the mood of the day, or to something else entirely, other than you. Don’t be discouraged. Just try again next time!



People First LanguagePeople first language emphasizes who a person is, not what a person has.

Instead of: Say:

Afflicted with, victim of, stricken with or suffers from polio (for example).

(This kind of reference makes it seem like this person needs to be pitied. In fact, most people with disabilities live full productive lives.)

The person had or has polio

Wheelchair bound

(A person is usually not tied to his/her wheelchair. The wheelchair is a tool that helps people who cannot use their legs properly to get around. A wheelchair gives a person freedom of movement; it doesn’t take it away.)

Person who uses a wheelchair

Disabled person Person who has a disability

Handicapped

(This word is still used for things like parking space signs. However, the origins of this word lead people to believe that people with disabilities need charity.)

Person with a disability

Blind person Person who is blind

Deaf person Person who is deaf



Discussion Issues

If someone has their life impacted by a new physical disability (for example, if a car accident drastically reduces their mobility), what changes might the person need assistance with? What open-ended and close-ended questions should an I&R Specialist ask?

What might be some of the direct and indirect benefits of referring someone with disabilities to a peer-based service such as a Center for Independent Living (CIL)?



A woman calls her local Aging and Disability Resource Center. She says that she has been searching the internet for options to move out of her parents’ house, is on waitlists for several group homes and Section 8 apartments and is tired of waiting. She expresses frustration that she is 35, and still living in her childhood home in “a room that has pink paint and frilly curtains”. Her mother “is willing to help her with personal care tasks such as showering and getting dressed, but doesn’t treat her like an adult”.

The specialist explains that in order to figure out what service options are available, he will need to get more information. The caller says she is happy to answer any questions, as long as she can get help moving out. The specialist inquires about what organizations the woman is already working with to find housing, and how long the waits are. He also inquires about whether the woman works or goes to school outside her home, has or needs a personal care service, and what level of daily assistance she needs with personal care tasks, meal preparation and transportation.

The specialist checks the services database and realizes that the caller has done her housing homework. She has put in applications to every possible housing option and now must wait to hear back once she reaches the top of a waiting list.

Scenario



Because the woman did not mention her local Center for Independent Living (CIL) as one of the organizations she is currently working with, and has never heard the term, the specialist explains that CILs are a great place to start when looking for independent living resources. Based in local communities nationwide, CILs are consumer controlled, nonprofit agencies designed and operated by individuals with disabilities.

He also explains that while the caller is waiting for placement outside her childhood home, and depending on her current personal income, there are a few options for receiving in-home, community based services, possibly through a Medicaid HCBS Waiver, such as Personal Care Attendant (PCA) services in which she would be able to hire someone on her own, or request that an agency select someone. He also told her about a local volunteer organization that does odd jobs around the house such as painting and building ramps for people with disabilities.

The specialist asked if the woman would like referrals for any of these services and she said it wasn’t exactly what she was originally looking for, but she was glad to verify that she had done everything she could to find housing. While she waits, she would like to be more independent of her mother’s help, so she would like to check into each of the possible PCA and home modification options.

The specialist provides the referrals, and suggests the woman call back if needed.



� A “disability” is a physical or mental impairment that substantially limits one or more major life activities of an individual. It is estimated that up to 18% of the US population has an impairment that is a substantial limitation and that can be termed a “disability”.

� The various different types of disabilities can be divided in different ways. Here is one example:

� Cognitive or intellectual disabilities � Mental/emotional disabilities � Physical disabilities � Hearing disabilities � Vision disabilities � Multiple disabilities

� Many of the limitations imposed on people with disabilities are due to perceptions and barriers in the environment, and with access to effective services, supports and technology, people with disabilities can live independent, productive lives.

� People with disabilities are not “broken” and do not need to be “fixed”, but rather are the experts regarding their unique life situations, and every effort would be made to ensure self-determination and self-direction in the services and supports they require.

� Like other minority groups, people with disabilities can face intentional and unintentional discrimination in their daily lives, and it is important to understand the basics of the laws that prohibit discrimination on the basis of disability.

Summary of Key Points



� The disability rights and independent living movements emphasize consumer control – the idea that people with disabilities are the best experts on their own needs. Given the proper resources and information, people with disabilities can be empowered to be effective self-advocates.

� Centers for Independent Living (CILs) are non-profit organizations run by people with disabilities for people with disabilities, are located in every state and territory, and can be viewed as the primary resource for accessing services and navigating complex service systems.

� Home and Community-based Services (HCBS) promote independence for people with disabilities to live, work, and play in the community, and should always be the “First Choice” option over institutional and residential services.

� “Person-first” language in terms of disabilities emphasizes who a person is, not what a person has. People with disabilities are people first, and should not be defined solely by the presence of an impairment and/or health condition.



Test Questions

1. Which of the following may be termed a cognitive disability?a. An impairment which inhibits the ability to rememberb. A disability that reduces mobilityc. A problem that impacts the ability to hear d. One of a variety of mental illnesses

2. Independent living refers to when people with disabilities are able to:a. think for themselves.b. seek their own funding opportunities.c. live on their own as single people.d. make their own decisions about how they live their lives.

3. Which of the following may be a service particularly needed by someone with a severe disability to support independent living?a. Utility assistanceb. Attendant carec. Health servicesd. Training programs

4. A consumer-controlled agency such as a Center for Independent Living means that:a. all of the staff are persons with disabilities.b. the majority of the clients are people with disabilities.c. 51% of staff and 51% of Board members are persons with

disabilities.d. the agency receives no government funding.

5. If you are in a public place and see a person with a disability who may need some assistance, what is the best approach?a. To take the initiative without askingb. To ask the person if they are having problemsc. To introduce yourself and ask if you can help in any wayd. To assure the person that you have a family member who is

disabled



6. Persons with disabilities:a. are the exact same as everyone else and therefore need the

same services.b. have the same needs as everyone else and in some instances

need special services to attain them.c. have unique needs related to their specific disabilities and

require all their own special services.d. live independently from the requirement to need additional

services.

Answers

Answers to earlier True or False quiz:

1.FALSE4.FALSE7.FALSE2.TRUE5.TRUE8.TRUE3.FALSE6.FALSE9.FALSE

1.a.3.b.5.c.2.d.4.c.6.b.

introductory exercises - new hampshire

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