It was a VERY troubling message” says Paul Andrew, remembering what he heard from a group of autism parents, advocates, and providers about the state of social services for people with autism in 2005. And it moved him to action.
As Managing Director of Community Services for the accrediting agency CARF International, part of Andrew’s job is to monitor the medical and disability communities for emerging service issues which are in need of new accreditation standards. For any given service area, CARF standards provide a tool by which families can identify dependable service providers – and avoid ones who may be well-intentioned but insufficiently prepared.
But Andrew’s experience with the autism community was unique. “What surprised me most,” he says, “was the overwhelming emotions of the parents. They were tired. They were discouraged. Most of them had had divorces or family issues based on trying to work with this child. They lacked support. They were lonely. They were frustrated with the community.” The parents, he remembers, often broke into tears as they spoke.
But there was a problem – the parents and advocates wanted CARF to single out autism for special consideration in its standards. That is not how CARF usually works.
Headquartered in Tucson, Arizona, CARF, International, (originally the Commission on Accreditation of Rehabilitation Facilities) is an independent, nonprofit accreditor of health and human services. CARF certifies the quality of service providers in areas such as medical rehabilitation, pain rehabilitation, vocational services, and pediatric specialty programs, among others. CARF accredits providers in 17 countries in North and South America, Europe, Asia, and Africa. The services endorsed by CARF touch more than 8.3 million people each year in more than 20,000 locations.
However, when CARF accredits an organization for employment and community services, it is usually NOT for services to one specific disability group. “In our manual, we just talk about services,” says Andrew. This means the accreditation standards focus on service categories that meet needs for a range of disabilities – categories like medication monitoring, assistive technology, employment transition, respite care, or community integration. “We have very few sections that say, ‘Oh, yes, this is for persons with spinal cord injury, or persons with a head injury’,” Andrew comments. Officially, Autism was a type of developmental disorder, not something that needed unique standards – it should be subsumed by the general categories.
Dr. Joel Smith, Executive Director for Autism Services Association in Wellesley, Massachusetts, argued that autism was different.
Smith is one of CARF’s field surveyors – the on-the-ground people who take the CARF standards manual and make on-site visits to assess a provider’s services. In and around Boston, if you apply for CARF accreditation in employment and community services, the chances are Smith will be the one who shows up at your door. Smith and Andrew have worked together for years.
In 2000, Smith was appointed to the Board of Directors for the Autism Society of America. Soon after, Smith got an idea – CARF and the Autism Society could team up on national accreditation standards for autism. “If we could get standards for autism,” Smith says, “then parents would be able to go to agencies that were accredited in autism and get quality services. It could also be an impetus for private providers to attain accreditation so that they would be able to serve people with autism.”
It was Smith who first told Paul Andrew that autism deserved investigation for emerging service issues. Initially Andrew was a little skeptical of Smith’s request: “We thought, ‘Well, why can’t you just fold this into something else? Why wouldn’t it just sort of fit in as this or that program? But the argument from Joel was ‘We need to identify this as a special, growing concern, and we need to bring this to people’s attention.’”
Smith was persistent, raising the issues several times over the next few years. Then Andrew began to hear similar requests from CARF surveyors in Canada. Finally, he agreed to investigate and asked Smith to assemble the focus group in Boston.
That first group of around twenty-five participants included parents, service providers, funding providers, representatives from the Autism Society, and other professionals. It also included Dr. David Holmes, long-time autism advocate and founder of the Eden Institute in Princeton, New Jersey. While Smith was mainly focused on adult employment, Holmes brought a focus on planning across the life span.
For Andrew, the meeting started off like many other focus groups he has conducted before: “You bring them in. You ask them, what kind of achievements or outcomes do you want for your children? What are some challenges in your life as parents? What are some of the challenges that your adult children have in getting their job and living in the community? You kind of put that all up as your starting point and you begin to kind of bring it forward into what we should be doing in the standards to try and accomplish the kind of services that people need and want.”
But it didn’t go the way other focus groups had gone before.
Andrew remembers, “These emotionally laden things came flooding out of the parents, often times crying – they needed these services, they had to have these services, their lives had been trashed, the other kids were falling behind or having trouble. It’s very hard not to take it personally, after all, given our mission statement and given the emotion that came flooding out of these parents.”
After the focus group, Andrew contacted other CARF surveyors in Florida and New Mexico and held similar focus groups there. The results were the same – there were not enough supports, the children and adults often did not meet qualifying criteria, the existing services were not adapted to the needs of people with autism, and most agencies were not paying attention.
The strong messages from the focus groups convinced Andrew and his colleagues at CARF that autism DID need separate standards. “It’s our contribution,” says Andrew, “A way to grab people’s attention and begin to build the proper kinds of funding, expertise, training, and referral sources so people know where they can find the services that will help them live their lives.”
Within a year, Andrew’s office circulated an initial draft for review. They got back more than four hundred comments and suggestions, including comments from Japan, China, and Europe, and the U.S. In August, 2007, the final standards were released to the CARF website.
They are quite detailed: the adult services standards are twelve pages long, the child standards are seven. Among other things, the two standards require providers to:
- Promote early detection
- Empower families and individuals to make decisions
- Create and support lifelong self-advocacy skills
- Provide mentoring services for families
- Develop lifelong supports and community resources for persons and families
- Increase social contacts and support communities
- Network with governmental, educational, employer, and other community resources
- Promote research-based therapies with peer-reviewed track records
- Train staff on the unique features and needs of people with autism
- Facilitate transitions from school to successful employment and community living supports
- Provide individualized, comprehensive life planning, based on the preferences and needs of the individual
- To be accredited, an organization must apply these standards in their services for at least six months
As of early 2011, CARF had accredited 9 child autism service providers in the US across 6 states (4 in Canada) and 14 adult autism service providers in the US across 10 states (4 in Canada). The CARF website (www.carf.org) provides a search tool to locate these organizations. (Note: some organizations providing autism services are accredited under other CARF standards and are not yet listed accredited for autism-specific standards.)
Smith says that, although the collaboration between CARF and the Autism Society has not fully developed as he hoped, the standards are a major step forward: “It’s not a great feeling to go to a provider and say, ‘Can you serve my son?’ and they reply, ‘We really don’t know anything, but we’ll try.’ That doesn’t instill a lot of confidence in parents. Now, at a number of places I have gone to, they actually use the standards as a guide for their programming.”
Andrew says he, too, is pleased with the standards. In particular, he is encouraging families and individuals to use the standards as a benchmark against which to measure their local service providers and start conversations with providers. It is important to remember that a service provider which lacks accreditation does not necessarily lack commitment or quality. It just means individuals and families may have to do some extra research on their own to ensure they get quality services. “If there’s anything that I hope the standards will do,” Andrew says, “It is to result in those families being able to mentor each other, develop supports with each other, and help the families impact their communities.”
The autism standards are included in CARF’s Employment and Community Services Standards Checklist, available for $50 at www.carf.org.
Dr. Scott Standifer is a Clinical Instructor for the Disability Policy & Studies office (DPS) at the University of Missouri. He is the author of Adult Autism & Employment: A guide for vocational rehabilitation professionals, and of the online Handbook of Disabilities. He is an organizer of the annual Autism Works National Conference, held in St. Louis each March, and has presented on Current Trends in Autism Employment for The Thompson Center for Autism and Neurodevelopmental Disorders. He can be contacted at email@example.com or through his website www.dps.missouri.edu/Autism.html.