Acknowledgments

The World Institute on Disability would like to acknowledge the publications and individuals that helped make this resource possible.

David Hoff, National Center on Workforce and Disability (www.onestops.info). Access for All: A Resource Manual for Meeting the Needs of One-Stop Customers with Disabilities.

Dr. Glenn T. Fujiura, Center on Emergent Disability, Department of Disability & Human Development at the University of Illinois.
(http://www.uic.edu/depts/idhd/ced/text/projectstxt.htm)

World Institute on Disability Staff

Dede Leydorf, former Training and Public Education Manager
Simi Litvak, former Senior Researcher and Policy Analyst
Bruce Curtis, Project Manager

Copies (including those needed in alternate formats) are available upon request to Dede Leydorf at the address information provided above.

Readers are encouraged to photocopy and distribute this document.
Acknowledgment of the source is appreciated.

SUMMARY OVERVIEW

Many Individual Development Account (IDA) administrators are unaware that they currently serve a large number of persons with disabilities in their programs. Disabled participants go unnoticed because disabilities may be non-visible, such as learning disabilities, chronic illness and psychiatric disability. Furthermore, few people with disabilities voluntarily self disclose their condition.

While there is no national assessment of how many people with disabilities participate in IDA programs, one can reasonably speculate that a large number do. People with disabilities permeate social service programs because of the high level of poverty in this population. For example, in Temporary Assistance for Needy Families (TANF) the participation rate generally hovers at approximately 40% -50% depending on location.

IDA providers help all participants in their programs when providing universal program accessibility. IDA providers can likely improve overall success rates of participants in meeting their goals, by assessing disability status during intake as a matter of practice and by providing support services accordingly. In addition, programs can collect demographic data on people with disabilities as they do other populations, which is useful for program and macro policy development.

IDA providers can seamlessly integrate disability questions into their intake process. WID encourages IDA administrators to use the multiple-choice, two-question IDA Participant Program Access Assessment Intake Form attached to this guide. This guide provides advice on how to ask questions about disability, while insuring confidentiality and sensitivity to the nature of the request.

The World Institute on Disability (WID) strives to collect information on the participation rate by people with disabilities in IDA programs. WID strongly encourages IDA administrators to share their information with us so that we may continue to educate the community at large on issues related to disability and IDA participation. Furthermore, WID is available to provide training and technical assistance as resources permit.

We hope that you find this information valuable and encourage your comments so that we may continue to improve disability assessment for IDA administrators.

QUESTIONS AND ANSWERS

Q1. Why is it important to collect disability-related information from Individual Development Account (IDA) participants?

A1. People with disabilities permeate social service programs across the board, including IDA programs. According to the 2000 census, 49.7 million people have a disability in United States; that is one in every five people. The ratio tends to be much higher in social service programs, because poverty persists in the disability population. Therefore, it is not a matter of seeking out disabled IDA participants; it is a matter of providing appropriate services to your current client base. In order to do so, IDA providers need to assess the disability status of each participant and from that point their potential need for special services. By assessing disability status during intake, IDA providers can help to ensure each participant’s success in the program by determining if special supports are necessary.

Q2. How many people with disabilities are likely to be in my program?

A2. No organization or governmental body has officially counted the number of people with disabilities in IDA programs. There are only speculative assessments at this point. However, the high participation rate of people with disabilities in other social programs may be indicative of similarly high participation rate in IDA programs. The Center on Budget and Policy Priorities stated that from 12% to 80% of Temporary Assistance for Needy Families (TANF) participants across the nation have disabilities. As many as 53% in one state had physical disabilities and up to 49% in another state had learning disabilities. Many IDA programs serve TANF recipients; therefore, it can be reasonably determined that IDA programs likely serve a proportionate number of disabled clients.

Q3. What should I be aware of before asking a participant about his or her disability?

A3. IDA providers should establish specific organization-wide policies for inquiring about a participant’s disability status and for managing that information. Consistency among IDA staff is important. The willingness to disclose disability will vary from one individual to the next. Some individuals will gladly self-disclose, while others will not be willing to or may not be aware that they have a disability. When the client does not disclose his or her disability, s/he may not receive important services to succeed in the program. Confidentiality is therefore critical. Some important guidelines include:

1. Never discuss the person’s disability in front of other people.
2. During intake, request disability related information in writing with a simple check-off box procedure.
3. Offer a private space to those individuals needing assistance filling out forms so that they may discuss their disability if necessary.
4. Make the reasons for asking about the disability very clear, by explaining that disclosure will enable you to provide special services if needed in order to help the person succeed in the program.
5. Understand that disclosure of disability status is strictly voluntary.
6. Share disability related information only with relevant individuals, who directly work with the individual or who will be providing special services, and keep it in a confidential location.
7. Collect only relevant information; an entire health history is not necessary. For example, it would only be necessary to know that a person has visual impairment and needs to sit in the front of the room during financial literacy courses; it would not be necessary to know the person’s diagnosis.
   
   

Q4. How do I ask an IDA participant about their disability?

A4. Many IDA providers rely on IDA participants to disclose their disability arbitrarily. This approach will only identify a fraction of disabled participants. IDA providers do have a few options for gathering this information. They can use a written screening instrument, in-depth interviewing during case management, or they can train staff to better recognize disability. Ultimately, some combination of all of these approaches insures recognizing disability among IDA participants.

When interviewed by WID, IDA providers said that brief screening instruments would be most useful along with training. In response, WID developed the two multiple-choice disability intake questions attached to this guide. These screening questions combined with regular face-to-face, personal observation during case management are complementary methods for identifying disabled clients. IDA providers need not be medical experts to identify disabilities, but at a minimum should receive some kind of disability awareness training. Training can help caseworkers to work more sensitively with clients who have disabilities and to be able to observe certain signs and symptoms of disability. Local Independent Living Centers, other local disability organizations, and the World Institute on Disability all provide disability awareness training. If a disabled participant has a significant disability, a referral may be in place to a collaborating agency for intervention. Intervention may be in the form of providing technical assistance to the IDA provider, or by providing special services to the individual so that he or she may be able to participate in an IDA program down the line. The ability of the agency's staff to use community services greatly depends on the availability of the disability support services and resources in any given community.

Q5. How do IDA participants feel about disability intake questions?

A5. Each individual feels differently about discussing their disability. Because of negative experiences, many people with disabilities hide their condition or are reluctant to disclose their disability status. Others will gladly discuss their disability at length. WID conducted two focus groups with IDA participants to gather comments regarding disability assessment. Focus group participants felt that since they were given the opportunity to participate in the IDA program that they did not want to “rock the boat” by asking for special services and so did not disclose their disability. Regardless of the fact that many participants needed some type of accommodation, they kept their needs quiet. One participant said, “her pride would get in the way” of asking for help. Another felt that requesting accommodations could jeopardize her standing in the program. The IDA participants felt comfortable with an intake form that assesses disability and accommodation needs; in fact, this was preferred to the individual having to make the request independently. It is important to let each participant know that answering disability related questions is voluntary and that it is completely confidential, not affecting an individual standing in the program. Furthermore, intake workers should clearly tell the individual that by disclosing disability information they receive additional supports to help them succeed in the program. Even after knowing this information, some may still feel uncomfortable sharing information; this should be respected.

Q6. How were the WID disability questions developed?

A6 . WID examined how employment agencies, disability groups and vocational rehabilitation services approach assessing disability of their clients. Dr. Glenn T. Fujiura, of the Center on Emergent Disability, Department of Disability & Human Development at the University of Illinois, had the most similar viewpoint to our own. He stated that when people are directly asked if they have a disability that the individual is less likely to share information than if they were asked if they have a “functional limitation”. A functional limitation is a specific ability that an individual lacks; for example, if someone cannot see a face across the room, that individual has a limitation with their vision. Therefore, it does not matter what condition caused the visual impairment or the name of the disability, just that the person may need special seating arrangements in a classroom. By focusing on functional limitations the IDA participant does not have the dilemma of identifying with disability or defining what disability means to them. He or she simply needs to identify the specific limitation that may require special support services, also known as "accommodations".

Using this approach, WID first developed and tested a fourteen question disability intake form with Bay Area IDA providers. Because of comments from IDA providers, WID reduced the questionnaire down to two multiple-choice questions. WID streamlined questions so that they could more easily be integrated into an already lengthy intake process, and developed an approach whereby intake questions could be asked in person or by telephone.

The questionnaire begins with guidelines of information to share with the participant before asking disability-related questions. The first question then identifies if the participant has any functional limitations. The second question provides examples of accommodations to help ensure successful completion of the IDA program. Finally, there is a closing statement for the intake worker to read to the participant to encourage an open and ongoing dialogue on accommodation needs.

Q7. Is there any reason why the IDA participant may not want to disclose their disability?

A7. As mentioned earlier, each individual feels differently about talking about their disability. Unfortunately, people with disabilities learn through experience that there is a stigma associated with disability and fear losing services and opportunities by disclosing this information. Every attempt should be made to respect an individual’s wish for confidentiality or his or her desire not to disclose information. IDA intake workers should clearly state that disability related information is collected so that the individual may receive all services necessary to succeed in the program and that the information has no bearing on qualifying for the program.

Q8. What it is a reasonable accommodation?

A8. Reasonable accommodations, generally associated with the Americans with Disabilities Act, are services to support the needs of people with disabilities. Most accommodations are surprisingly inexpensive and easy to provide. The typical IDA participant may request access to materials in formats they find easier to use, tailored environments and procedures to make IDA services easier to use successfully. (Specific examples might include large print materials with a type size of 18 or larger, audio-taped materials, materials on disk or sent by email, meeting reminders, holding the meeting in a quiet place to enable concentration, and one-on-one follow-up support.)

It is important not to make assumptions about what accommodation an individual may want. Each individual has their preferences. For example, two individuals with visual impairment may request two different types of accommodation; one requesting information on computer disc or Braille, another requesting audio taped materials. When identifying accommodations, you should encourage a communicative process. If one particular accommodation is cost prohibitive, there may be an alternative that is acceptable to the individual. If you should have any questions about this process, you should either contact your local Independent Living Center (found in the Yellow Pages or at www.ncil.org) or contact WID’s IDA Training and Technical Assistance Program. Also, the Job Accommodations Network (JAN) (http://janweb.icdi.wvu.edu/ & 1-800-526-7234) has many examples of job accommodations that could also be useful for IDA administrators to keep in mind for IDA participants.

Q9. How do I protect confidentiality?

A9. It is extremely important to protect each individual’s right to privacy. Questions should be limited to only what is necessary to know. Therefore, learning about an individual’s functional limitations would not require knowing his or full health history or diagnosis. Participants may casually offer sensitive information; if so, this too should be kept in the strictest of confidence. When collecting information on disability the caseworker should be sensitive to the surrounding environment and not ask the IDA participant discuss their disability unless it is in a private enclosed area. Furthermore, questions about disability should be asked in writing when it is necessary to do the intake in a public area. If the individual needs to discuss their disability, offer to move your conversation to another area that is private. When conducting intake by phone, be sure to let the person know that they should answer with a simple yes or no if they are in a public space or at work. It is important to have informed consent from the individual before proceeding; that is a clear understanding that it is okay to proceed with questioning.

IDA staff should share information about a participant's disability only with those who will need to know that information. Therefore, staff working directly with the individual on a regular basis. IDA staff should only discuss a participant’s disability in exclusively private areas. Likewise, do not ask an individual about their disability in front of others, such as in a classroom setting. Above all else, do not share the information with other organizations except for WID. Finally, information about a participant’s disability should in no way reflect their qualifications to participate.

Q10. How will assessing IDA participants ability ultimately help my program?

A10. By including disability related questions in the IDA intake process and by providing accommodations as needed, IDA providers will help to insure the success of all of their participants. People with disabilities already participate in IDA programs, although uncounted. It will be paramount to their success in the program that they receive all necessary accommodations and services. IDA providers can maximize the experience of IDA participants with disabilities by asking all participants what they need to succeed in the program.

A11. Where can I find additional information?

Disability Training and Technical Assistance
World Institute on Disability IDA Program

One-Stop Disability Resource Manual
Institute for Community Inclusion
http://www.communityinclusion.org/onestop/onestopmanual.html

To Locate Your Local Independent Living Center
National Council on Independent Living
http://www.ncil.org