VESID / ILC / Toolbox

Centers for Independent Living
Standards, Performance Report and Data Collection Guide

Updated: March, 2009

Centers for Independent Living Standards, Performance Report and Data Collection Guide: Word (149KB, 21 pgs.)
Centers for Independent Living Standards, Performance Report and Data Collection Guide: PDF (62KB, 21 pgs.)

Table of Contents

• General Instructions
• Glossary of Terms
• Part 1: Instructions for Narrative Report
• Part 2: Instructions for Direct Services and Statistical Report
• Part 3: Instructions for Self-Evaluation with New York State Standards
• Part 4: Instructions for Attachments
• End of Year Report
• Part 1: Narrative Report
• Part 2: Direct Services and Statistical Report
• Part 3: Self-Evaluation with NYS Standards
• Part 4: Attachments
• Appendix A: Mid Year Report
• Appendix B: Examples of Community and Systems Change

General Instructions

WHO MUST COMPLETE THE REPORT AND WHERE AND WHEN MUST IT BE SUBMITTED?

This report addresses compliance with the New York State Education Law sections 1121 - 1124 regarding Centers for Independent Living. It also serves to report data reflecting results of contract activities for the previous year.

The NYS Centers for Independent Living End of Year Report must be completed by Centers for Independent Living that receive New York State Aid to Localities funding. Also, centers are required to complete a Mid Year Report. Title VII, Part C funded centers must complete a separate Federal Centers for Independent Living 704 Annual Performance Report in addition to this State report.

The NYS Centers for Independent Living End of Year Report is due to VESID on or before November 15 of each contract year. The Mid Year Report is due to VESID on or before April 30 of each contract year. Reports must be available in hard copy and disk copy and mailed to:

Office of Vocational and Educational Services
for Individuals with Disabilities
Independent Living Services Unit
One Commerce Plaza, Room 1605
Albany, NY 12234

Technical assistance with report preparation is available through the VESID Independent Living Services Unit by calling (518) 474 2925.

PURPOSE OF THE REPORT

The purpose of this report is to:

THE REPORT IS STRUCTURED TO:

Glossary of Terms

Center for Independent Living

A Center for Independent Living (CIL) meeting the definition in Section 1121 1124 of the New York State Education Law as a community based, non residential, and not for profit organization whose governing board is composed of at least 51% people with disabilities and which serves the needs of people with disabilities.

Community and Systems Advocacy

Activities to affect permanent change to policies, practices, decisions and environments in the public and/or private sector that control resources necessary to enhance integration, inclusion, and independence of people with disabilities as a group.

Consumer

Anyone receiving services from a CIL including people with disabilities and non-disabled individuals. Non-disabled individuals include the disabled person's family members or significant others and people from businesses, agencies and governments.

Consumer Service Record

A Consumer Service Record (CSR) is maintained for an individual with a disability (does not include family members, significant others, agencies, businesses, governments, etc.) receiving independent living services. A Consumer Service Record needs to only be established for individuals who receive frequent or ongoing services from the CIL. The following information is maintained in each CSR:

• Annually updated educational and employment status data from intake/consumer profile forms
• Consumer signed and dated notification of rights and responsibilities as a consumer of the CIL
• Rights and responsibilities document that includes acknowledgement of consumer right to confidentiality
• Rights and responsibility document that acknowledges and describes an internal CIL grievance process
• Rights and responsibility document that acknowledges the availability of VESID with a contact address and phone number for addressing consumer complaints about CIL services
• A record of specific services provided that includes:
  • Specific services received
  • Dates of service contact
  • Referrals made on behalf of consumers(either written or other formal referrals)

CILs should not require detailed information from "casual" consumers who receive any independent living service on a one time or infrequent basis, as this may discourage casual service requests. Unduplicated counts of "casual" consumers, and of agencies or businesses served, should be maintained for inclusion in the CIL's reports of individuals receiving services and total consumers served, but this does not require a full CSR.

Non-disabled consumers and businesses will not require a CSR or be counted within demographic data reported. Basic tracking information of non-disabled consumers including name, address, phone number, service received and other pertinent documentation must be available in order to include such consumers in quality and customer satisfaction measurements.

Independent Living

Independent Living (IL) is a non medical, non residential, self help, program model of advocacy and support services, for people with all disabilities of all ages. Agencies subscribing to this model, are governed by a majority of people with disabilities; use a nondirective peer approach to providing services in a supportive and informal environment; provide freedom to consumers to pursue their own dreams; expect and assist consumers to fully experience, accept and learn from the results of their own actions; emphasize community change advocacy to increase the full integration of people with disabilities in all aspects of community life; and promote a positive view of disability at all times.

Independent Living Services

Services that may be provided by CILs under NYS law which are consistent with the Independent Living Program Model.

Milestone Toward Systems Change

A milestone toward systems change is a "significant" step in the work plan to achieve a result that is absolutely necessary to achieve the outcome. One example of a milestone would involve the passage of legislation. If a particular legislator has voiced opposition to legislation and his/her support is key to its passage, and activities undertaken by the CIL lead to his/her change of position by signing onto the legislation, then a milestone has occurred. When the Governor signs the bill into law, a CIL can be credited for system change. VESID reserves the right to review and determine the extent of activity toward an outcome in relation to achievement of milestones of systems change.

Minority Groups

Alaskan Natives, American Indians, Asian Americans, Black (African Americans), Hispanic Americans, Native Hawaiians, and Pacific Islanders.

Outreach

Outreach activities are necessary to maintain equitable distribution of services across all components of community demographics. Outreach activities are required when a CIL determines that the Racial/Ethnic demographic characteristics of its consumers are out of proportion to those of its community.

Reporting Year

The most recent State Fiscal Contract Year. Contract year is October 1 September 30.

State

Wherever the term "State" is used, it refers to New York State in its sovereign sense.

Systems Change

Permanent change to policies, practices, decisions and environments in the public and/or private sector that control resources necessary to enhance integration, inclusion, and independence of people with disabilities as a group.

Part 1: Instructions for Narrative Report

All attachments should be referenced in the body of the report but included at the end under Part 4: Attachments.

I. Community and Systems Change Activities and Outcomes

List the contract goals, activities and outcomes under each of the six systems advocacy categories A. through F. below. Include the activity and outcome for a goal that was not stated in the contract but added during the contract year. Count all systems change activity from all funding sources. Be clear to delineate activities from outcomes and milestones of systems change. Placement of activities, outcomes and milestones in an advocacy category depends upon the issues being addressed and the system being changed. For example, efforts to change public transportation systems will go under Commerce, while work toward improving transportation specifically for seniors to attend a social event would go under Social. Distinguish between outcome achievements for the reporting period and updates on outcomes accomplished in a prior reporting period, as systems change credit cannot be granted again for refinements to a previously credited outcome. Reference Appendix B "Examples of Community and Systems Change" for further clarification on measuring outcomes.

Documentation will be required by VESID on a case by case basis. The type and scope of documentation requested could vary depending upon the advocacy area or type of outcome. Well described steps taken to achieve an outcome should be noted under the reporting of "activities". Improving access in the business community, educational facilities and elsewhere should be described in detail. Outcomes should be supported with documentation such as: if a curriculum developed by the CIL was added into a training model then it should be attached, if a new committee or task force gained representation of a CIL staff member or consumer then an appointment letter or minutes of a meeting should be attached, and if legislation was passed through a bill or proclamation then the detailed extent of CIL involvement should be attached along with a summary of the bill or proclamation.

Centers for Independent Living must achieve one systems change outcome in at least three of the six systems advocacy categories A. through F. in the contract year. If systems change is not achieved in three required systems advocacy categories, an acceptable program improvement plan must be submitted to VESID for continued funding within 30 days following the unacceptable performance finding outlining efforts to contact and receive community and systems change training from other high performing NYS CILs.

Category G., Other Community and Systems Change Issues, has been added for your convenience and is optional. No outcomes achieved under G. can be counted as part of the three outcomes required by the contract between the center and VESID.

Goals: In this section of the report "goals" refers to those items listed in the CIL's contract under I. Community and Systems Advocacy Plan, Categories A. through F.

Activities Leading to Community and Systems Change: May encompass but are not limited to:

• Issue oriented education
• Coalition building
• Alternative solutions framed and presented
• Legal action coordinated
• Public displays of contrary opinion
• Group education presented to the public at large
• Lawful direct action
• Targeted public relations campaign
• Coordination of group testimony and opinion
• Promulgation of legislative action

Systems Change Outcome Categories Applied to Individual Independent Living System Advocacy Efforts: May encompass but are not limited to:

• Adoption of a new policy or procedure
• Adoption of legislation, guidelines, regulations
• A new service or program in the community
• Addition or change to information disseminated
• Removal of architectural, programmatic or communication barriers to services and programs
• Change in the distribution of funding or resource allocation
• Increase in empowerment, authority and control by people with disabilities as a group
• Increase in group social, economic, political or spiritual autonomy
• Elimination of segregated, separate, unequal or stigmatizing policies, programs or services
• Prevention of the adoption of an adverse policy or procedure
• Prevention of the adoption of contrary legislation, guidelines, regulations

A. Education

Educational Advocacy: Includes efforts to influence positive change to systems that control resources necessary to increase training and learning experiences across the life span for people with disabilities as a group.

These systems include but are not limited to:

• Preschool, nursery school and day care programs
• Elementary, middle, secondary and continuing education programs
• College, universities, technical schools and trade programs
• Adult education, technology and business training

B. Employment

Employment Advocacy: Includes efforts to influence positive change to systems that control resources necessary to increase competitive and integrated employment opportunities for people with disabilities as a group.

These systems include but are not limited to:

• Employment and job placement agencies
• Labor offices, unions, business councils
• Private and public human resource offices
• Rehabilitation and vocational programs
• Economic development programs
• Workforce development programs

C. Health Care

Health Care Advocacy: Includes efforts to influence positive change to systems that control resources necessary to promote health and wellness of people with disabilities as a group.

These systems include but are not limited to:

• Medical and paramedical associations
• Health care institutions such as hospitals, clinics, skilled nursing facilities, doctors offices
• Health care management organizations and health insurance providers
• Disability prevention and health promotion programs
• Employee assistance programs, substance abuse programs domestic violence programs
• Nutrition, dietary, food pantry
• Shelters, therapeutic recreation and rehabilitation medicine programs
• Continuum of community based home care and Medicaid Waiver services

D. Commerce

Commerce Advocacy: Includes efforts to influence positive change to systems that control the resources necessary to engage in economic and marketplace activities by people with disabilities as a group.

These systems include but are not limited to:

• Housing such as real estate dealers, private and public housing stock, adult retirement communities, private development and management corporations
• Transportation such as trains, airplanes, buses, taxis, car services, automobile rental services, tour bus lines
• Private and public business entities such as restaurants, banks, libraries, hotels, catering halls, cinemas, retail shops, etc.
• Public service entities such as state and local governments, courts, and law enforcement

E. Social

Social Advocacy: Includes efforts to influence positive change to systems that control the resources necessary to engage in integrated and community based social, recreational and leisure pursuits by people with disabilities as a group.

These systems include but are not limited to:

• Parks, camping facilities, fitness trails
• Sports arenas, health spas, concert halls
• Amusement parks, sports clubs, social clubs, camps, theater groups, beaches, swimming facilities
• 12 Step meetings
• Fishing and marina facilities
• Places of worship

F. Citizenship

Citizenship Advocacy: Includes efforts to influence positive change to systems that control the resources necessary to participate fully in the conduct of civic responsibilities and opportunities for people with disabilities as a group.

These systems include but are not limited to:

• Voting sites
• Polling sites
• Public meeting locations
• Public committees, work groups, boards and task forces
• Political campaigns, public forums

G. Other Community and Systems Change Issues (optional)

Include other activities which had an impact on the community but which may not be covered by one of the preceding categories.

II. Technical Assistance to the Community (Education/Awareness)

This section should contain information on trainings, in-services, workshops, awareness activities, presentations provided by the center to groups of consumers, businesses, agencies, etc. in the community. Provide bulleted lists including topics, date, targeted audience and number of participants. This section could also include Architectural Barrier Consultations, American with Disabilities Act (ADA) workshops, Individuals with Disabilities Education Act (IDEA) trainings, Fair Housing Act in-services, etc. given to groups.

III. Public Relations

Describe activities which promoted center services and disability-related issues including appearances on radio, television, and in print media as well as center publications (newsletters, brochures, annual reports), web pages, volunteer recognition events, etc. Attach press releases, public service announcements, publications, articles, web site address, etc.

IV. Resource Development

Report on annual goals and objectives related to diversifying funding and developing resources other than New York State Independent Living allocations. Include grants applied for and/or received, special events, fees-for-service, development campaigns, etc.

V. Staff and Board of Directors

VI. Outreach

VII. Determination of Community Need/Consumer Involvement in Center's Mission and Philosophy

Describe activities that promoted consumer involvement in the development of the center's policies, services, programs, etc. This could include focus groups, advisory boards, ad hoc committees, etc.

VIII. Training and Technical Assistance Needs

If the center has identified training and technical assistance needs for the next fiscal year, list these needs in order of priority (from most important to least important). Please be specific.

IX. Deinstitutionalization Cost Savings

All Centers for Independent Living are required to report results of assistance provided to consumers to prevent or transition from an institutional setting to integrated community settings using the VESID approved statewide cost benefit reporting model. The CIL Deinstitutionalization Cost Savings Report Summary must be submitted as an attachment to the End of Year Report. VESID updates its cost benefit analysis of assistance provided to consumers to avoid or leave an institutional placement once a year at the end of each contract period.

When submitting the CIL Deinstitutionalization Cost Savings Report Summary it is not necessary to provide Individual Consumer Worksheets. If there has been activity in this area, the statement "See attached Report Summary" would suffice.  If there has been no activity in this area during the report period, submit a statement of "No Activity" in order to confirm the completion of this section of the report.

Part 2: Instructions for Direct Services and Statistical Report

Count all statistical data from all funding sources.

I. Demographic Data for People with a CSR

Report unduplicated demographic data for all consumers with disabilities with a Consumer Service Record (CSR) served during the report year. Include data for new consumers with a CSR started since October 1 of the report year and returning consumers with a CSR served during prior reporting years that have returned in the reporting year. Every item of demographic data must be recorded for every consumer with a CSR unless a consumer is unwilling to provide it (in which case "unknown" should be recorded for the missing data). Age, Education Status and Employment Status must be updated annually for each consumer with a CSR. The six demographic categories A. through F. must agree. These demographic categories do not need to agree with the disability data.

Reporting "unknowns" is not an option under County(s) Served. Each consumer with a CSR should have a mailing address to identify the county of residence. If a consumer lives in another state/country, give the name of that state/country.

II. Disability Data

Report all people with disabilities who received services (people with and without a CSR) during the report year.  While an unduplicated count is provided for each of the five disability categories (A., B., C, D. and F.), the disability data can reflect more than one disability category selection of A. through D. by a consumer, which would also be reported under category F.  For example, a consumer who selects both orthopedic and blindness would be reported under B. Physical, D. Sensory, and F. Multiple Disabilities.  Reporting “unknowns” is not an option under categories A. through D. The Disability category must be recorded in order to document the establishment of a CSR.  People without a CSR may be individuals receiving the service of Information and Referral (I&R) only.  These individuals have also been referred to as “casual” consumers.  In order to document the impact of CILs on people with disabilities, CILs are encouraged to request name, address, and disability information from “casual” consumers.

III. Total People Served During Year

IV. Individual services - number of people served

For each service offered, report the unduplicated number of consumers receiving that service during the reporting year. The same consumer can be counted in more than one service area.

Part 3: Instructions for Self-Evaluation with NYS Standards

The purpose of the self-evaluation is to assist the center to assess its compliance with New York State Education Law Section 1121 1124.

The items appearing in this section are requirements reflecting essential elements that a center must meet to comply with the statutory definition and operation of a Center for Independent Living (CIL) and to be eligible for continuation funding.

This section provides guidance against which a CIL should review its activities to determine compliance with the requirements in the event of an on site compliance review. If the CIL does identify problems, a program improvement plan must be submitted within 30 days following the unacceptable performance finding to remedy the problems. The CIL should note what actions have been and/or will be taken along with respective time lines to correct the deficiency and describe such actions in a separate attachment entitled "Program Improvement Plan to NYS Standards" under Part 4. Attachments.

Part 4: Instructions for Attachments

All attachments referenced in Part I. Narrative Report should be placed in this section. This can include items that will help to illustrate or document activities mentioned in one or more sections of the narrative. For Part 1: III. Public Relations, it is required to attach all pertinent items such as press releases, public service announcements, publications, articles, web site address, etc. For Part 1. IX. Deinstitutionalization Cost Savings, attach a completed CIL Deinstitutionalization Cost Savings Report Summary. If a Program Improvement Plan(s) is indicated in Part 1: I. Community and Systems Change Activities and Outcomes, VI. Outreach; Part 2. III. D. Total consumers projected in contract to receive direct services; and/or Part 3: Self-Evaluation with NYS Standards, the completed plan(s) should be placed in this section.