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Bark’s Bytes # 11 | VAPOR (Very Appealing Promises Obfuscating Reality)


It would be nice to simply ignore these anonymous false prophets, however, professionals need to challenge their assertions until we are consistently listening and acting upon the goals and dreams of people with disabilities.  To that end, I found the “Values & Principals” offered in the memorandum to be very well stated and have included them here as printed.

1.   Disability is a natural part of the human experience that in no way diminishes the right of individuals with disabilities, including individuals with the most significant disabilities, to achieve the four goals of disability policy – equality of opportunity, full participation, independent living, and economic self-sufficiency.

2.   Self-determination and informed consumer choice are essential elements in all programs and service options.  Informed consumer choice means a voluntary, well-considered decision that an individual, or where legally required, the individual’s legal guardian, makes on the basis of appropriate options, information and understanding.  Self-determination means acting as the primary causal agent in one’s life, being able to make choices and decisions about one’s quality of life, free from undue and unwanted external influence.

3.   Work is physical or mental effort directed toward production of goods, the provision of services, or the accomplishment of a goal.

4.   Work for pay (employment) is a valued activity both for individuals and society.  Work provides both tangible and intangible benefits.  Work helps people achieve independence and economic self-sufficiency.  Work also gives people purpose, dignity, self-esteem, and a sense of accomplishment and pride.

5.   All individuals, including individuals with the most significant disabilities, should enjoy every opportunity to be employed in the workforce, pursue careers, advance professionally, and engage actively in the economic marketplace.

6.   Individuals with disabilities, including individuals with the most significant disabilities, should be empowered to attain the highest possible wage with benefits, consistent with their interests, strengths, priorities, abilities, and capabilities.

7.   Exploitation of workers with disabilities is illegal and abhorrent.  Workers should enjoy meaningful and effective protections against such exploitation.

8.   Input from all stakeholders, particularly program participants and their families and/or advocates, where appropriate, is critical in the design, implementation, and evaluation of home and community-based waiver programs.  Documentation of the process for and results from gathering input from stakeholders must be required by CMS for the submission of a state’s initial waiver application and for waiver renewals.

9.   Input from employers and knowledge of the marketplace is critical to effectively direct employment-related training and services.  Based on information from the employment marketplace, employment-related training services and supports should recognize that employers want to hire qualified individuals, including qualified individuals with disabilities (i.e., individuals who, with or without reasonable accommodations, can perform the essential functions of the job).

10. Employment-related training services and supports should be provided to assist individuals with the most significant disabilities who choose to pursue employment.  While a priority should exist for competitive, integrated employment, it should be recognized that other valid service outcomes may occur, including paid work in center-based program settings, in accordance with the Fair Labor Standards Act, self-employment, and volunteer (unpaid) work.

11. When individuals choose to pursue competitive, integrated employment, service providers should use best, promising, emerging practices with respect to the provision of services and supports to obtain and maintain competitive, integrated employment.  Technical assistance should be available to service providers for the purpose of expanding and improving their capacity to use such practices.

12. Under the Home and Community-Based Services (HCBS) waiver program, a continuum of services are authorized, including day habilitation services and expanded habilitation services (such as prevocational services and supported employment services).  Prevocational services may be furnished in a variety of settings that are designed to enable persons with a disability to acquire, improve, retain (maintain), and prevent deterioration of functioning that prepare them for paid or unpaid employment.  Such prevocational services should not be job-task oriented but instead, aimed at a generalized result.

The need for prevocational services should be identified in an assessment of adaptive behavior, which includes behavioral, self care, social, communication, and vocational skills.  Goals and objectives should be based on this assessment, and should be part of the individual’s habilitation/care plan, which is developed by a full interdisciplinary team (IDT).  The IDT should include the individual, a guardian (if one has been appointed), professionals completing the assessments, and direct service personnel who will carry out the plan of care.

The goals and objectives in the plan must reflect services to meet the individual’s expanded habilitative needs rather than explicit employment objectives.
The amount, duration, and scope of prevocational services provided to an individual should be based on the individual’s needs identified in the assessment that arise as a result of his or her functional limitations and/or conditions, including services that enable the individual to acquire, improve, retain (maintain), and prevent deterioration of functioning consistent with the individual’s interests, strengths, priorities, abilities and capabilities.

Prevocational services provided to individuals may assist them in reaching their optimal level of functioning.
A state should never subject an individual to arbitrary time limits regarding the provision of prevocational services, such as time limits based on the site or location of the prevocational services or by substituting part-time services for full-time services when full-time services are considered necessary and appropriate by the IDT.

13. There is a need to make available necessary and sufficient funding if states expect service providers to increase opportunities and options that result in employment outcomes that are consistent with an individual’s choices, interests, strengths, priorities, abilities, and capabilities.

At Merrick, Inc., we define “meaningful employment” as having the following five elements:  (i) a task preferred by the client; (ii) completed in a setting of the client’s choice (e.g. facility-based or employer-based); (iii) appropriate for the client’s demonstrated abilities; (iv) consistently available for the client’s desired schedule; and (v) generates a wage satisfactory to the client.  Notice these are based on client choices and abilities not some universal outcome desired by a bureaucracy looking to reduce expenses and/or professionals desiring more speaking engagements.

I would encourage professional organizations to discuss the values and principals outlined above with the intent to adopt and practice them to the best of our abilities.  As I stated in my first editorial, it is ALL about a commitment to – “self-determination and genuine person-centered planning so that each client’s unique needs, expressed preferences, and informed choices are known and acted upon”.  Anything else is just VAPOR.