Perkins School for the Blind Transition Center

The Direct Care Collaborative – Two Populations in Crisis: Adults with Severe Autism and Those That Support Them

As most of us who are reading this page know, there is a paradoxical relationship between the increasing numbers of people with Autism Spectrum Disorder (ASD) entering adulthood every year and the decline in available services. Indeed, the number of adults (22+) with autism is estimated at 200,000, a number that is projected to increase to 750,000 by 2030 (Khan, 2015). Federally mandated supports end at age 22. Individuals go from well-trained, well-educated staff, often in a 1-1 setting, to living in group homes where the staff ratio is on average 1-3.

Portrait of a multidisciplinary team standing in a hospital corridor

The staff facing these difficult challenges is not trained, is severely underpaid and turnover is very high. Approximately 40% of people with ASD do not receive any mental health, medical or speech services once they exit the school system (Shattuck et al., 2011). These factors have created the perfect storm, leaving young adults unprepared for transition and vulnerable throughout their lives.

There are over 4 million Direct Care Workers in the United States, comprising one of the largest and fastest growing workforces in the US. Nearly half (49%) receive public assistance to supplement their incomes (Paraprofessional Healthcare Institute, Nov 2013). To put this in perspective, direct care workers are paid a mere 92 cents more than a crewmember at McDonalds (McDonalds Corp, 2015). Demanding work combined with low wages, inadequate training, and limited opportunity for advancement set the stage for high rates of attrition. Staff turnover has both obvious and hidden costs for organizations.

It is important to understand the relationship between the lack of training and support of direct care staff and the quality of life of individuals served. Many leading service providers acknowledge the relationship between the competencies of their direct care staff and the wellbeing of those they support. They further recognize that increases in total compensation, combined with training and growth opportunities for staff, would have a dramatic effect on the cost of turnover and other related expenses. Unfortunately, agencies are managing tight budgets and are focused on short-term outcomes. They are chasing the never-ending challenge of filling these key positions. Operating in this reactive mode has blinded leadership to the insights that would come from taking a longer and more thoughtful view when making important, quality of life decisions.

While leaders agree that better training, compensation and opportunities for direct care staff is the right thing to do, it seems that we will not see any real change until there is concrete evidence that taking a proactive approach is also the smart thing to do. So how do we as a society move from ineffective, high-risk systems and processes to real transformation?

The Direct Care Collaborative

To provide a more complete perspective of the opportunities that exist to improve the quality of life of both of these marginalized groups, The Direct Care Collaborative was established. The collaborative proposes a cost benefit analysis comparing the impact of investments in training, a living wage, performance-based compensation and opportunities for professional growth to cost savings to the care provider, the broader community and society at large. This work is significant and may provide the required evidence that supporting these populations, in addition to being the right thing to do, may also be the smart thing to do. Our goal is to become a national model in the training of staff to improve their lives and the lives of those they care for.


Service Provider: Bancroft

Bancroft has been a service-provider in New Jersey, Pennsylvania and Delaware for 130 years. Annually Bancroft serves 1,500 individuals with autism, other intellectual or developmental disabilities and those in need of neurological rehabilitation. Their methodology is evidenced based and all programs have a clinical presence.

This Collaborative will begin by creating a demonstration site at the Lakeside Campus. Lakeside is a campus-based setting that serves 48 individuals with severe autism, including, complex and challenging behaviors. Many of the individuals do not have natural language and have been unsuccessful in traditional group homes. The pilot will include two homes and eight individuals.

College/University Partners: NJ Community Colleges and Universities

The Collaborative will include a(n) Educational Partner(s) that will incorporate the Bancroft competency curriculum. The goal is the development of a skills based certificate program. The certificate will be available as a stand-alone program and as a prerequisite for an Associate or Bachelor’s Degree and/or credits and supervised hours towards becoming a Registered Behavior Technician (RBT) or Board Certified Assistant Behavior Analyst (BCABA).

Research Design: Dr. Laurie Sperry (see bio at end of article)

Project Management: Dr. Cyndy Hayes (see bio at end of article)

Proposed Project

Our project is comprised of four cornerstones aimed at addressing the needs of the direct care worker and the person with ASD:

Professional Development – Our mission is to professionalize and incentivize training for direct service workers. To accomplish this goal we will develop competency based, video training modules leveraging the expertise of Bancroft clinicians and other autism experts. The training will incorporate the videos and hands on practice and feedback sessions to reinforce competencies and reflect the principles of adult learning. Staff will provide modeling, coaching and feedback to the direct care staff. As adults are accustomed to being autonomous and self-directed they will have opportunities to share their expectations and training needs that must be met. These sessions will be filmed and edited and become a major component of subsequent training initiatives and support the sustainability and scalability of the work.

Adults want information that is timely and topical. Theory is not helpful to the adult learner without pairing it with practical, relevant solutions. They need to focus on current and real life issues, rather than material that may be useful in the distant future (Satterfield, 2013). To that end, Bancroft managers will provide additional coaching within the direct care staff’s work settings. Workers will be asked to apply information to current work situations as research has demonstrated that a new skill that is not used within 30 days of its acquisition is often lost (Knowles, Holton, & Swanson, 2014).

Career Ladders – To retain and motivate individuals in the direct care field, there must be a clear path for advancement. A career ladder will be developed that will include levels of skill and experience leading to supervision, managerial or clinical positions. Each of these will require different competencies and will include salaries commensurate with those competencies. Performance reviews will focus on performance and career goals. Direct care workers will not have to leave a position to advance. Even if they choose to stay in the direct care position, salary steps will acknowledge their knowledge, experience and skills.

Metrics – Measurable outcomes are particularly significant in this initiative. In addition to proof of concept, metrics may provide the tool necessary to change public policy regarding how people with autism are served as well as create a living wage for the millions who serve them.

  • Individuals Served – Data will be collected on Individual behaviors and skill acquisition throughout the pilot for comparison to baseline.
  • Care Provider Metrics – Dashboard will measure costs including turnover, overtime, staff medical costs and legal fees
  • Related Costs – Other related costs will include the cost to insurers for hospitalizations, ER visits, complications, medications, and re-hospitalizations.
  • Other CMS – Cost of public assistance to direct care staff by ensuring a living wage.

Community Building – Community building is imperative to enhance the ability of the individuals served to participate within their community in a safe and meaningful way. Community building will begin with a large stakeholder workout session including parents and guardians, staff and management, members of the board and leadership team, support agencies, local businesses and the community at large. This diverse group of stakeholders will co-create the future at its best for the individuals served. This shared vision will drive the strategy and guide the action planning.

Concluding Thoughts

This initiative will provide four urgently needed outcomes:

  1. Opportunities for two million direct care workers to advance their training and education and thereby earn a living wage and reduce this population’s reliance on public assistance.
  2. Reduce the employee turnover and thereby create a stable employee base allowing administrators to focus on the individuals they serve rather than dealing with constant staff replacement, reducing the high costs associated with turnover and overtime.
  3. Provide the stable training, direction and relationships that are critical to improving the lives of individuals with autism and other related disorders.
  4. Reduce the disruption that staffing changes cause, residential and day programs will become stronger and more effective.

For additional information, please contact Dr. Hayes at

Dr. Cyndy Hayes, DBA, is an international lecturer in leadership and organizational development, and has led major organizations in strategic change and cultural transformation. She continues to use her organizational skills in her advocacy of individuals with autism. She has led several non-profit organizations that provide support to individuals with autism and their families. She is currently President of Aging with Autism. Dr. Hayes co-founded Advancing Futures for Adults with Autism, a National Collaborative that many credit with starting the national dialogue on the needs and challenges of adults with autism. She is also founder of the iAssist Company, a social enterprise dedicated to providing technology and support to teens and adults with severe autism. She is a parent of a 25 year-old son with severe autism.

Dr. Laurie Sperry, PhD, BCBA-D, participated in global outreach in Australia, Saudi Arabia, Qatar, Jordan, Africa, Saipan, Singapore and developed a school for children with ASD in Bangalore, India. She served as a Principal Investigator on OSEP grants and IES grants. From 2004-2007 Dr. Sperry served as a director of the OSEP funded Professional Development in Autism (PDA) Grant, working with US school districts to build 33 model ASD classrooms. During her tenure as director, Dr. Sperry and her staff worked collaboratively with districts to build 33 model sites across the nation. In 2010 she worked at Griffith University in the Department of Arts, Education and Law, Australia. While in Australia, Dr. Sperry worked to build model sites in rural and remote parts of the country. Starting with the development of one model site, she worked with state and local agencies to develop 4 additional sites across the country.


Khan, A. (2015). Is the U.S. Prepared for a Growing Population of Adults with Autism? U.S. News and World Report. Retrieved from:

Knowles, M. S., Holton III, E. F., & Swanson, R. A. (2014). The adult learner: The definitive classic in adult education and human resource development. Routledge.

Paraprofessional Healthcare Institute, Update, Nov 2013

Satterfield, M. (2013). How to Incorporate Principles of Adult Learning into Training. Retrieved from:

Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post–high school service use among young adults with an autism spectrum disorder. Archives of pediatrics & adolescent medicine, 165(2), 141-146.

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