Every year, in every state, hundreds more individuals with Profound Autism age out of educational services and enter the adult services system. This process is described by many as “falling off a cliff.” Families despair of finding services that will allow their adult child to maintain their hard-won skills, continue to enhance their independence, and live lives of satisfaction and purpose. For many individuals with Profound Autism, this means continuing intensive communication and behavior supports that help them regulate themselves, maintain safety, and participate meaningfully and happily in activities.
Unfortunately, most adult service systems were designed decades ago for very different populations of adults, and they don’t include these vital supports. Parents are warned during the transition process that they need to make sure their adult child can function at lower levels of support because that is all that will be available. While this advice is well intentioned and certainly supports should be faded if they can be without causing regression, many adults will not be able to be safely served with supports removed. Many programs, observing this behavior regression will simply deny the adult participation in activities, leading to a vicious cycle of regression in skills and increases in unsafe behavior leading to further isolation of the individual, and in some cases expulsion from the program.
The Burden on Families
Parents/Guardians must be persistent in advocating for the level of support needed, including marshalling data to show the value of appropriate supports and the consequences of poor support. Parents need to educate themselves on what programs in their area can provide, and their ability and willingness to support everyone’s needs, and assist in advocacy for appropriate levels of support. It is important to begin this process several years before a child ages out, and parents should also get to know their state representative and senator and ensure that the needs of their child are well known.
What it Takes to Build Programs that Fit
Nashoba Learning Group (NLG), saw this cliff looming for our students as they began to age out of our school program 13 years ago. We resolved to create a program that provided what those with Profound Autism needed. One that would allow them to continue to thrive, add skills, and participate in activities in the community. We have worked very closely with our state’s Department of Developmental Services (DDS) and MassHealth (Medicaid) to help them understand the reality of the needs of this growing population, and to advocate for funding that allowed provision of the necessary services. DDS and MassHealth have worked with us to try to find as much of a match as possible between the funding parameters in place, and the needs of these adults. There has been slow, but meaningful progress in advancing funding, but unfortunately, within the systems in place, there is still a large gap between the funding we receive, and the costs of providing the services needed. Fueled by the growing crisis in adult services for those with intensive needs, we advocate for changes to the system and to funding levels. We have continued to grow, from our first adult in 2013 to currently serving 75 adults. We have funded the gap between costs and rates with continuous private fundraising efforts. We had to engage in extensive fundraising before we opened our doors to support the costs of procuring and renovating space and provide a needed buffer of funds to allow us to grow. Annual fundraising isn’t optional; as we grow, our fundraising target must increase each year. We are constantly balancing the need for the services we provide, with our ability to maintain the fundraising needed to fill the gap.
Critical Factors in Building a Program that Fits
And what should an appropriate Adult Program look like for this population? Offering a variety of functional and enjoyable activities at the program and in the community is important but is not the driver of whether the program is a good fit. First, there must be recognition that each adult is an individual with unique strengths, challenges and needs. Each person needs a customized multi-disciplinary assessment and plan, developed by an experienced Board-Certified Behavior Analyst (BCBA) in collaboration with other specialists. This plan should be implemented by trained and well supervised staff, with analysis of progress, and adjustments made as needed. Wages, benefits, culture, supervision, and development opportunities must be designed to keep staff turnover low and create a positive, team-oriented environment and camaraderie between staff and adults.
Assessment is an essential first step because each adult has unique needs and challenges. Understanding their history and collaborating with the school program to facilitate transition are essential to ensure continued forward progress. At NLG, each adult receives skilled assessment, and individualized behavior and skills building plan development led by a skilled and experienced BCBA. The assessment team includes a Speech Therapist with experience in Augmentative Communication, because communication needs are individualized and core to success. Nursing, PT, and OT are also critical to assessment and plan development, as are the individual’s medical providers. Part of the assessment includes determining the staffing ratio each person needs to be successful as well as the right starting point for participation in each activity offered. Some of our adults require one-on-one staffing, others can be successful in a staffing ratio but may need extra support during specific activities.
The best plans in the world only work if they are implemented well daily and monitored and revised as needed. Each staff member must be well trained, not only in the principles of behavior, reinforcement, and skills development, but they must also learn the specific plan for everyone they serve, including skills targeted, prevention activities, de-escalation where needed, ongoing communication support, as well as medical and other needs that may affect the person. Each staff member must be compassionate and empathetic to the individuals they serve. And they must feel supported by their supervisors and peers when working with the adults, including attention paid to adding to their own skills. They also need support any time there is a crisis. At NLG, each new staff member receives two weeks of training before they can work solo with an adult. They then continue to receive training, feedback and assessment of skills, as well as development opportunities throughout their careers. Clinical staff mentor each staff member and are available for support and coaching.
A critical component of recruiting, training, and retaining staff is providing the compensation and benefits that match what these individuals can command elsewhere. Paying staff appropriate wages and providing development opportunities reduces turnover and encourages staff to continue their careers in the field. The cost of direct care staffing is the lion’s share of NLG’s cost to serve each individual and is more than the wage levels built into rates. An enormous part of the nationwide shortage of direct care staff is that the wage levels offered are not competitive with what these individuals could earn at much easier jobs. Similarly, programs must pay market wages to attract and retain skilled BCBA’s to provide oversight and individualized assessment and treatment that is critical to success.
Benefits of the Right Program
Providing appropriate support is costly, but the increment in costs needed to ensure individualized support by trained and supervised staff is essential. With this skilled support in place, adults with intensive needs due to Profound Autism can thrive, including adding to their life skills, enhancing communication, and engaging in activities and volunteer work in the community. Highlighting these outcomes to those with the power to change systems and set funding is essential. So is contrasting these outcomes to the high costs, in reduced safety, loss of skills, need for emergency services and psychiatric hospitalizations, and the burden placed on families, of not providing these services. We have a lot of work to do as we continue to advocate changes to systems to accommodate differences in needs and allow every adult to get appropriate services. When systems don’t meet the needs of those they serve, the answer is not to try to force fit people into the system. Rather, it is the systems that need to change. With the right Programs, adults with Profound Autism can live lives of dignity and purpose.
Liz Martineau, BCBA, LABA, MBA, is CEO and President of Nashoba Learning Group.
