Independent Living Institute


this page is from 1992 for current information see CONCEPTS OF INDEPENDENCE
Personal assistance
Concepts of Independence, Inc.:
a unique approach to personal assistance
by Sandra Schnur and Ira Holland

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Concepts of Independence, Inc. offers an opportunity for self-directing persons with disabilities to maximize their goals of living independently. If such an alternative were not available, these same people would be forced to receive services from an agency that does not consider their needs and strengths, only their physical limitations. As representatives from Concepts have said,"...without Concepts, one controlling health care institution would be exchanged for another." This statement reflects the reaction to conventional home health care systems that require passivity on the part of service recipients and a willingness to accept agency mandates. An agency can send any available personal care attendant with little concern for the working relationship.

In several states, the local department of social services has elected to fund personal care services for elderly and disabled persons. This is done in New York with Medicaid monies for persons with minimal income, who are elderly or disabled, and who are authorized to receive personal care services. The Human Resources Administration is the administering agency for Medicaid and home attendant personal care services in New York City.

Because of the threat of agency intervention and domination (i.e., workers who have an allegiance to the hiring agency, not to the consumer), a core group of severely disabled persons held a protest demonstration in 1977 outside the chambers of the New York City Board of Estimate which approves City contracts. People in motorized wheelchairs, most of whom had to have their ventilators plugged into corridor outlets, sat waiting to talk with Board of Estimate members.

The demonstration led to many meetings with City and State representatives, which took place over a two-year period. In 1979, this same core group of severely disabled persons developed and presented an alternative mode of service delivery to City and State representatives. The alternative is Concepts of Independence, Inc., New York City's only client-maintained plan. Its services are available throughout New York City's five boroughs; currently, Concepts offers a system of recruitment assistance which helps to augment the member's own program of locating appropriate candidates for home care employment. In order to become a Concepts member, a person must be Medicaid eligible, authorized to receive personal care services, and be deemed self-directing by the Human Resources Administration (based upon a completion of a lengthy questionnaire).

Concepts members are varied in age and lifestyle as is the general population, but all Concepts members have disabilities of varying significance. All Concepts members receive varying allotments of personal care attendant hours based on the recommendation of a team that includes a physician, nurse, medical social worker, and a Human Resources Administration caseworker.

Concepts is a fiscal intermediary that receives Medicaid monies to administer personal assistants payroll and benefits package. Upon hiring a personal assistant, it is the member's responsibility to enroll the person, to fill out and submit weekly time sheets.

Concepts is unique in that it requires members (consumers) to interact directly on a one-to-one basis with their personal assistants. Members of Concepts receive and distribute payment directly to the personal assistants, thus reinforcing the belief that the personal assistants are the employees of the consumer, not the agency. Concepts requires members to choose their own lifestyles. For Concepts members, this means assuming responsibility for recruiting, hiring, training, supervising, paying, dismissing and developing a cadre of backup personal assistants.

Currently, Concepts offers a system of recruitment assistance which helps to augment the member's own program of locating appropriate candidates for home care employment. In addition, Concepts Board of Directors has written Living Independently: A Consumer's Guide About Personal Care Attendants. This publication offers advice on such topics as how to recruit help, developing emergency backup resources, how to interview, supervising your employee, lifestyle choices, evaluating your employee, and terminating your employee.

The ability to determine one's lifestyle as well as how, when, and with whom this will be accomplished has resulted in greater self-esteem and satisfaction for each Concept member.

120 Wall Street Suite 1010
New York, New York 10005
Phone: 212-293-9999
Fax: 212-293-3040

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