There has been much discussion about bridging the gap between school services to adult services for students with Autism Spectrum Disorders (ASD). Families might experience this transition as a leap into the unknown. The daunting task of finding quality services for individuals with ASD is a cradle to grave process. Families are faced with the responsibility of locating, evaluating and choosing services often without experience, knowledge or guidance. What assistance is needed to support families in their decision making process?
A group of concerned professionals gathered to discuss the quality of adult services specific to individuals with ASD and how to help families make informed choices for their family member. Based on their work with families, the professionals recognized that caregivers could be looking at a variety of quality indicators when they shopped for services. A family’s values and preferences are the overall guide to services being assessed. Depending on their family member’s specific needs and the intensity of those needs, families might be considering the quality of medical care, educational and vocational programs, recreational opportunities, etc. Two quality indicators that were often cited by families as being keys to their choice-making were related to happiness and safety. Happiness is an abstraction and defined differently for most every individual, but it seemed important to find some measure that addressed this priority need.
The outcome of this work is the Quality Residential and Other Services for Adults with Autism Guide. The services being evaluated might include residential, vocational or other supports. The guide is a starting point for individuals/families/guardians to use in evaluating programs when seeking services for adults with ASD. It could also be used by service providers to evaluate how their existing services meet the needs of adults with autism. The guide addresses the following six categorical areas related to service provision: Health and Safety; Happiness/Well Being; Community/Recreation/Leisure; Staff; Administration; and Program.
For each of the previously mentioned categories of quality indicators, there are subcategories to consider. For example under the category of Health and Safety, families are directed to look at multiple levels of information gathering, including Health Care, Environmental Issues and Safety. To assist in their information gathering families are provided questions; such as “Where are the visual supports for safety posted?” “How do you incorporate special interest and talents into activities?” and “What specific autism training is given to staff?” Families are encouraged to add some of their own questions to the list. There is also a section on the guide for note keeping.
Below is a listing of topics and suggested questions/observations that may be explored in the evaluation of services for those with ASD.
Quality Residential and Other
Services for Adults with Autism
A Guide for Individuals,
Families and Service Providers
- Health and Safety – Health Care
How do you provide medical care?
Who is the medical provider?
How do you provide dental care?
How do individuals get medications?
Who is responsible for administration of medications?
How do you provide for individuals preferences/dietary needs?
Physical activity & exercise:
What opportunities are there to exercise/have physical activity?
How do you assist/support routine daily hygiene?
Health and Safety – Environmental
How do you keep the environment clean?
How do individuals access technology?
How do you modify the environment to meet sensory needs?
What visual supports for daily living are posted?
What accommodations are available for accessibility?
Health and Safety – Safety
Emergency safety plans:
What are your emergency safety plans?
What safety drills are practiced with individuals and how often?
Visual supports for safety:
Where are visual supports for safety posted?
Staff trained in safety measures:
How are staff trained in safety?
- Happiness/Well Being – Choice
Opportunity for choice:
How do you provide for individual choice?
Opportunity for free time:
How do you provide for free time?
Happiness/Well Being – Interactions/Well Being
What opportunities are there to develop friendships/dating/sexual relationships?
How does staff engage in activities with individuals?
What are the indicators of contentment and happiness in the environment?
Feeling of being valued in personal celebrations (e.g. birthday):
How does the staff make the individual feel cared for, accepted and respected?
How are special events celebrated?
- Community/Recreation and Leisure – Community Activities
Community activities available (e.g. religion, shopping, dining, volunteering):
How often so you provide for diverse activities for individuals in the community?
How often and what type of diverse community activities do you provide?
How do you integrate special interests/talents into activities?
Opportunities for learning:
How do you use community to support new learning and experiences?
Community/Recreation and Leisure – Support/Transportation
Transportation services provided:
What is used for transportation for community activities?
What supervision is provided for community activities?
- Staff – Hiring
How do you handle background checks of employees; current and new?
What qualities and skills do you value in employees?
How are staff evaluated? How do families give input?
Staff – Supervision
General staff training:
What is included in your staff orientation? What is included in ongoing training?
What autism-specific training is given to staff?
Supervised on the job:
What type and length of training does staff get before working alone?
How are staff supervised?
What is your staff turnover rate?
How do we evaluate equitable pay?
- Administration – Policies/Procedures/Manuals
What is the agency’s licensure/accreditation/certification?
Agency policy/procedure: How do you assess your policies/procedures?
Policy on Major Unusual Incidence:
Has your agency had any death, case of abuse/neglect, serious accident, and/or theft in the last five years?
Administration – Fiscal/Resource Management
Annual financial records:
How are financial records made public?
How do you oversee an individual’s personal money/possessions?
- Program – Self Determination
How do you determine and support what individual interests are?
Program – Program Components
How do you provide support for challenging behavior?
How does your program address/foster social skills?
How does your program address/foster communication?
How does your program address/support individuals in transitions or change?
Coordination of community services:
How does your program coordinate with other service providers?
How does your program measure the progress of the individual?
How do you support work adjustment and opportunities for employment?
How are families included in program planning?
“Quality Residential and Other Services for Adults with Autism” can be used by parents, guardians and service providers as a framework to assess potential services for individuals on the Autism Spectrum. More specifically, this guide can be used to determine if an agency, vocational and/or residential program provides services that are consistent with values of the family and are designed to meet the needs of a particular adult with autism.
Kay Brown, LISWS, is the Director of Southwest Ohio Regional Autism Advisory Council. Jan Cline, MS, CCC-SLP, is the Training and Consultation Director at Bittersweet Farms. Christine Keran, BA, is Director of Admission and Outreach at Sunshine Residential and Support Services. Donna Owens, MA, is the Director at the Family Center of Ohio Autism and Low Incidence. Andie Ryley, MEd, is Chair of the Northwest Ohio Advisory Council and is an Autism Consultant. Ellen Williams, PhD, is Professor Emerita at Bowling Green State University.
Choosing the Right Services for Your Adult with ASD is made available by the Ohio Center for Autism and Low Incidence (OCALI) at: http://www.ocali.org/project/donnas_favorites. This guide is intended to be shared freely.