Best Practices for Serving Adults with Autism
Results of the study on services and supports
for adults on the autism spectrum across
the United States
Full Research Report
Prepared by:
ASD
5572 Kirkwood Highway, Wilmington, DE 19808
Ph: 302-472-2638
Comments and requests for additional copies of this report may be directed to this address.
This study was funded by the Delaware Division of Developmental Disabilities Services (DDDS).
Description of Target Population 6
For individuals living with their family 13
For individuals living outside family home 14
Program level recommendations 15
Staff level recommendations 19
State level recommendations 20
References 26
Appendix I: Summary of observations for program visited 27
Appendix II: Project participants 52
Appendix III: Organizations contacted via phone or email 53
Not many years ago autism was a low-incidence disability—one person in 10,000 received the diagnosis. As a result, little research was done on the causes of or treatments for autism. Since most diagnoses were of children enrolled in special education programs under the Individuals with Disabilities Education Act (IDEA), adults usually went undiagnosed unless they had been identified by special education systems. In adulthood, things became more complicated for individuals with autism. Not only is there no adult service mandate like IDEA for children, but autism and Asperger Syndrome are much less frequently recognized as diagnoses warranting any services for adults. Thus adults who may have been identified as being on the autism spectrum as children have generally entered adult programs designed for individuals with cognitive disabilities or mental illness. Such services do not take into consideration the unique behavioral, communication, and sensory challenges presented by autism. These challenges greatly impact behavior, and do so differently in every individual. After serving children and young adults with autism for over 25 years in educational settings, we know that individuals with autism require highly specialized services and supports that address these considerable challenges. We also know that independence and post-school employment depend greatly on the quality and stability of services and the relevant knowledge, expertise, and commitment of support staff.
Further, we are at a critical juncture in the advancement of services for adults with autism. There has been a dramatic increase in the prevalence of autism over the past 15 years. Autism is the fastest growing developmental disability. Growing at a rate of 10 – 17% per year, these diagnoses are surpassing cerebral palsy and Down syndrome (Autism Society of America, 2005). The rapid rise in the number of children diagnosed with autism has most states scrambling to address educational programming, yet few have begun to address the needs of adults. As much as 90% of the costs are in adult services (Jarbrink & Knapp, 2001).
The national growth in individuals diagnosed with autism is well reflected in Delaware’s statistics. Until 2004 in Delaware, there were typically three to six students on the autism spectrum entering adult services each year. In 2004 there were 13 graduates of the Delaware Autism Program, in 2005 there were 21, and at least 25 graduates per year are projected by 2011.
Delaware has long been in the forefront of meeting the needs of children and adults on the autism spectrum, with a statewide educational program for 25 years, and the Special Populations program for adults in operation since 1989. However, our state must continue to uphold appropriate services and begin planning today. Unless proper planning occurs now, it is likely that future graduates of the Delaware Autism Program will enter programs that were not designed to address the complex needs of adults with autism. With increased public awareness about autism and a greater number of diagnosed individuals, it is reasonable to expect that the number of adults needing services will go beyond the graduates from the Statewide Delaware Autism Program. Newly identified adults may have received educational services under classifications other than autism as much as 25 or more years ago, or may not have been identified for special services at all. Yet, as adults, these individuals may manifest communication, behavior, and social problems that affect their ability to live independently and hold a job. The rising numbers of adults, the expanding diversity of their needs, and the growing cost of adult services are making it imperative that we ensure that services in Delaware reflect “best practices,” that is, services that are appropriate, flexible, highly individualized, and have a good cost-benefit ratio.
We must make a special note here about individuals with Asperger Syndrome. In 2005, Delaware’s Department of Education recognized Asperger Syndrome as part of the autism spectrum. Previously, this disability was not recognized nor are specialized services generally available within the educational system. There are many adults and increasing numbers of graduating students who are just receiving this diagnosis and who are applying for services. But these individuals are not generally eligible for any adult services because they do not have cognitive disabilities. At the same time they may not have the functional skills needed to live, work, and function independently in the community. All too often these adults place an undue burden on the social welfare system, frequently with costly emergencies, when in fact many of them have marked strengths which allow them to perform very capably at home and in the workplace, provided they have the proper support.
The effectiveness of IDEA mandated educational and related services programming and the application of best practices in the educational setting has produced many young adults who can, with coordinated and timely transition services, enter the DDDS Community Service program rather than the more intense Adult Special Population Program. Although these young people require less intense and less expensive services, they continue to have needs for supports that are unique to individuals with autism. Therefore, the capacity of the DDDS programs designed primarily to meet the needs of individuals with cognitive delays and/or physical disabilities must be enhanced to meet the growing needs of adults with autism and to ensure that skills gained in school are maintained and enhanced throughout adult life.
If we do not provide effective adult services and supports, we will be failing a generation of individuals by wasting considerable financial resources; years of time and effort invested by these individuals and their families; and the tremendous dedication of many staff who prepared them for a life of independence and productivity. We cannot simply terminate the supports for improved communication and behavior, management of sensory challenges, and social and community integration and not expect marked deterioration in skills. Individuals do not “grow out” of autism, nor does it just go away on its own. The much-improved behavior and skills seen in the current generation of students completing DAP will inevitably erode without maintenance. Both young and older adults on the autism spectrum need ways to maintain the skills they have, and to continue to learn.
There is a growing recognition in this country of the importance of continuing education, and the term “lifelong learning” is becoming more and more common. Similarly, while young people on the autism spectrum must transition and begin to meet the challenges of young adulthood, they too need ways to maintain the skills they have and continue to learn.
In the spring of 2004, in recognition of this situation, Delaware’s Division of Developmental Disabilities Services agreed to fund a study by the Autism Society of Delaware to formally identify best practices for adults with autism on a nationwide basis, to review services in Delaware, and to outline the steps required to ensure that best practices are adopted statewide.
The Autism Society of Delaware contracted with Dr. Susan Peterson to conduct the study. Dr. Peterson is a clinical psychologist with 20 years of experience working with students and adults with autism. A behavioral psychologist, she has extensive experience in both writing programs and teaching communication. Dr. Peterson was supported by the Executive Director of ASD, Theda Ellis, who has extensive experience in adult services, training, and systems change. The project was also guided by the Adult Services committee within ASD, chaired by Karen Bashkow, parent of a teenager with autism. Additionally, there was a consulting committee consisting of Marie-Anne Aghazadian, parent of an adult son with autism and director of the Parent Information Center of Delaware, Dom Squittere of the Delaware Autism Program, Michael Partie of Therapeutic Options, who has extensive experience in working with adults with autism, and Dr. Donald L. Peters, Professor Emeritus of the University of Delaware, and the former director of the UD Center for Disabilities Studies. Dr. Peters, a named professor in early childhood studies, has extensive experience in developing new approaches to research and service.
Starting in September of 2004, the study began with a formal literature review. Not surprisingly, little was found that was specific to effective services and supports for adults with autism. During this period, Dr. Peters worked with the team to develop a different approach. We made contacts with autism provider agencies through the ASA chapter network, and conducted a web search through the Association of University Centers on Disabilities (AUCD) and through Centers of Excellence on Autism around the nation to learn where research related to adults and autism or services related to adults and autism was being conducted. We also contacted the membership of NARPAA, the National Association of Rehabilitation Programs for Adults with Autism. This allowed us to obtain information on a large number of programs providing services and supports for adults with autism. We contacted or attempted to contact all these programs and scheduled phone interviews. From September 2004 through February of 2005, Dr. Peterson and ASD staff carried out 24 telephone interviews with key staff in these identified program sites. The interviews used standard questions, and were used to identify programs to be visited. We looked for programs that, reported unique or comprehensive approaches to supports, were identified by other programs and individuals as exemplifying best practices, and served sufficient numbers of individuals that approaches might be transferable to Delaware.
Site visits were scheduled at eight sites in seven states between November, 2004 and February, 2005. During visits, the team spoke with staff members at all levels, with parents of adults being served, and with some adults as well. We asked questions about what programs struggle with and what components work best for them. Dr. Peterson participated in all site visits. In addition, at least one of the following individuals also participated in seven of the eight visits: Theda Ellis, Karen Bashkow, and Marie-Anne Aghazadian, parent of an adult son and Director of the Delaware Parent Information Center. Visit summaries for the eight site visits can be found in Appendix 1 of this report. The visits and interviews were supplemented by a review of written program descriptions and other relevant literature.
Following the site visits, project participants met a number of times to review the findings and draft recommendations. Others assisted (please see Appendix 2, the list of project participants and those who assisted). Feedback was also solicited from the members of ASD’s Adult Issues Committee. All available information was reviewed from our varied perspectives and experiences of the participants with services in Delaware. Each program displayed a number of exemplary practices, but none of the programs exemplified all of what is construed as “best practices” as applied to Delaware’s needs. Our reviews and interviews tried to focus on where each program was exceptional or doing something uniquely innovative.
Description of the target population
The adults who will need to be served and supported in the coming years are from two differing populations. On one hand, growing numbers of young adults are completing Delaware’s Statewide Autism Program and have been preparing for this transition over an extended period. They have had a variety of work experiences; and they have received individualized communication, recreation and leisure, self-help, community, and social skills programming. While many of these individuals do not speak, almost all have at least some basic communication skills that allow them to make simple requests and to follow basic directions. Often they have had some experience living (part-time) in one of the Delaware Autism Program’s teaching homes. Many have a history of moderate to severe aggression, property destruction, and self-injury, although the vast majority of these problems are mild or rarely exhibited by the time of transition to adulthood. While these individuals have a range of functioning levels, they tend to have moderate to very significant needs for support. These young graduates can often demonstrate impressive performances on the job and in the community, but it must be stressed that these performances have taken place within the context of the high degree of structure and support provided within the Delaware Autism Program. Once they enter adult services, the appropriate type, level and quality of supports must be in place for this group to continue to function as well as they do while in the educational program.
It should be noted that Delaware does not offer an entitlement to adult services or assure any adult with a disability that services will be in place when they graduate. Further, as students graduate without severe behavioral challenges, they will most likely enter community programming designed for individuals with traditional developmental disabilities (mental retardation). The concern is that the good behavioral status seen in exiting students greatly reflects the strong systems of supports they have been receiving, and that skills will deteriorate and behaviors will decline when educational supports are replaced by the greatly reduced support level available in the adult system.
The second population is perhaps even more diverse. This group consists of adults who range in age from 21 through their 50’s, 60’s or beyond. While in school, they may have had a variety of educational classifications, such as learning disability or social-emotional disturbance, or they may not have been identified at all. Whatever their educational history, what they have in common are impairments that put them somewhere on the autism spectrum. Many are diagnosed with Asperger Syndrome. Most have relatively high cognitive functioning. Their adaptive skills, e.g., skills needed for independent living and working in the community, may be surprisingly limited in at least some areas, such as appropriate social skills. These individuals differ from those described previously in other ways as well. They generally do not have a history of effective programming or instruction in life skill areas. As opposed to students coming out of the Delaware Autism Program, where the transition has been planned, these individuals may develop significant needs quite suddenly, through the loss of natural supports such as death of an aged parent or loss of a job long held. Alternatively, they may have had no assistance with transition, and are often found at home, having failed to obtain or maintain employment. These individuals may also have to cope with the issues involved in being newly identified with an autism spectrum disorder. Even young adults who may have had appropriate services in school and functioned relatively well frequently find it much more challenging to make friends, keep a competitive job, and maintain their independent living skills once out of the structure of a school program.
These individuals currently do not quality for services through the state developmental disabilities program. Nor are they typically eligible for mental health services based on Asperger Syndrome. Currently the only state agency that provides services is the Division of Vocational Rehabilitation, and that agency is struggling to address the employment needs of this group. These services are short term and staff have little experience or education in meeting these needs. The vocational rehabilitation system was not designed to meet the needs of these individuals who need specialized lifelong support.
As we completed the interviews and visits, and began to analyze the information, we came up with the following assumptions and developed a list of Delaware’s strengths.
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Foundation and underlying assumptions:
The unique needs of individuals on the autism spectrum and their growing numbers require an expanded service/support network with more options. Specifically, we are basing our recommendations on the following assumptions:
Delaware’s strengths:
Delaware has its own values, experiences, and history, including legislative commitment to children and adults with autism. Additionally, Delaware is a small state, which facilitates training and program dissemination. Our “best practices” will have a unique Delaware flavor because in Delaware we have:
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Individualized Choices and Preferences
All of the recommendations, which follow, are intended to be as pragmatic as possible, with the goal of identifying ways to adapt current program models (keeping what works!) to best practice models so that adults with autism can experience meaningful and productive lives in their home communities.
One of the hallmarks of recent developments in the field nationwide, and one that is certainly embraced by Delawareans, is the notion that individual preferences and needs must be honored. This extends from issues as small as the color of paint the individual wants on the walls of his or her bedroom, to those as large as where a person prefers to work or live and with whom. Often a person will be able to express these preferences and needs. Much of the time, however, this will be more challenging due to communication limitations. In some cases, preferences can be determined through careful observation of the individual’s responses. Often a family member will serve as a key representative in expressing these issues, since the family will play an extremely important life-long role in many individuals’ lives. In many cases, a group of concerned individuals who know the individual well, including but not limited to the family, will collectively assess and express these issues. Whatever the means of determining the individual’s needs and preferences, it is equally important to recognize that this will be an ongoing process because these issues will not be static, and will change over time.
In recognition of these factors, a fundamental feature underpinning all of the recommendations which follow is that they are meant to represent OPTIONS that are a) flexible; b) developed for the individual; and c) responsive to changes in individual and family needs over time. We have provided many examples, but certainly the options presented here are not an exhaustive list. The key idea is that the services and supports are to be designed around the individual, as opposed to the individual “fitting” into the available service that may most closely meet his/her needs.
Working Assumption
This report, strongly supported by the Autism Society of Delaware, has only one specific working assumption. That is:
We assume that each individual will spend approximately 40 hours per week engaged in meaningful activity outside of the home, with at least 20 hours of this being gainful employment. This is regardless of where an individual may live, or what he or she may do across the day
While most of those we interviewed would agree with the notion of spending 40 hours per week meaningfully occupied outside the home, not all would necessarily agree with the employment priority. We chose it for the following reasons: Individuals and their families in Delaware have a 20-year plus history of strong vocational preparation and achievement. Families and staff have witnessed, and individuals have experienced, the pride that comes from these achievements, the satisfaction that comes from coming home to relax after working for a significant portion of the day, and the respect that is extended to individuals who do all they can do to provide for themselves.
Recommendations
The recommendations in this report are divided into three sections. First are recommendations for individuals and what should be happening at the individual level. The second set of recommendations address what should be happening at the programmatic level, meaning the support provider’s level, and finally, we have recommendations for the system, or state level. We believe that best practices can only be implemented across a state with both a systems and an individual approach. The intent is that best practices become embedded through a systems approach rather than the charismatic leadership approach that is the prevailing model for developing and implementing best practices.
A. Recommendations for all individuals
1. Individualize supports for the person with autism that strongly consider his or her desires and needs as well as the family’s values and needs. This calls for an individual budget and a well considered support plan.
Planning needs to start with each individual’s needs. This is the opposite of many typical strategies, which involve developing a budget to serve a group of people based on an overall estimate of needs. The first step in planning for the individual is to identify who should participate in the planning process. Key players should include the individual him- or herself, family members, and current staff members who know the individual well. Other participants may be drawn from among concerned individuals who are willing to commit to the planning process, potentially including friends, neighbors, co-workers, and advocates. An already-identified circle of friends fits the bill perfectly for planning purposes. Once participants are identified, it is important to follow some systematic process to identify the individual’s needs. Examples include the Essential Lifestyle Plan, which Delaware currently uses, or the Positive Futures Plan, used by the Institute for Applied Behavior Analysis (IABA). IABA may also do a functional assessment if there are significant behavioral concerns. The Positive Futures Plan is used to develop a preliminary service plan with an attached budget, which then is sent to the funding agency.
2. Provide professional support for trouble-shooting and problem solving, on the job site, in the home, or in the community; for behavior support, behavior development, expressive and receptive communication, sensory adaptations, and socialization.
Delaware’s history with the use of professional support leads us to strongly emphasize the importance of its continuing availability in adult services. Among the programs we visited, we saw differences in the relative emphasis placed on behavior vs. communication vs. sensory adaptations vs. socialization. The focus on communication and behavior issues, while strongly supported in the literature (e.g., Holmes, 1998; R. Koegel & L. K. Koegel, 1996; Quill, 1995), is also based in experience with students in the Delaware Autism Program (DAP) and with these same individuals as young adults. For example, DAP has a strong emphasis on functional communication (DAP is where PECS, the Picture Exchange Communication System, was first developed). Virtually every student completing the DAP has at least some basic functional communication skills, meaning that they can successfully indicate basic wants and needs, and follow critical directions, whether at home, at work, or in the community. This is a record that few educational programs for students with autism can match.[1]
As to providers of such supports (specialists vs. trained generalists vs. direct support workers) there was great disparity among our visited sites. We found an emphasis on the use of staff with 4-year degrees and some additional training, as opposed to specialists such as speech pathologists, behavior analysts, and the like. Funding is probably part of the reason for this. Most providers of adult services are not in a financial position to have such specialists on staff. At the same time, there is no substitute for this expertise. Use of specialist consultants who would work with selected full-time staff members may be one answer. Such specialists should be available on a routine, periodic basis (e.g., twice per month) and on an as-needed basis.
Sensory processing is another critical area that is often neglected for adults on the autism spectrum. They may be hyper- or hyposensitive to a wide variety of stimuli. For example, an individual may be very uncomfortable when wearing tight clothing, such as a shirt and tie, and perhaps has had a long history of outbursts when required to wear this type of clothing. Putting this person in an office setting that requires typical office attire is a recipe for disaster. In this case, one of the many available job settings which allows for more casual clothing is going to be more suitable. In other cases, it may be possible to provide an adaptation which works. If, for example, a young woman works best while listening to music, she can work in a quiet setting without disturbing others if she uses headphones.
While we all preach socialization and the development of social skills for individuals on the autism spectrum, this area takes on new importance for young adults once they leave school. Many times, the only friends an individual may have are those he made in school. Schools often provide structured socialization activities (dances and the like). Once these supports are no longer available, individuals who have not developed alternatives will suffer. In fact, this is known to be a very serious problem for adults with Asperger Syndrome, and is related to a greater incidence of depression and even suicide in some individuals (Attwood, 1998).
3. The range of support options available should include one-to-one support. Matching individuals with a compatible support person as well as compatible roommates is a priority across programs and systems.
Staff support ratios must be individualized. Needs may vary for the same individual depending on the setting he/she is in. One-to-one support may be needed, at least temporarily, when new skills are being taught, and/or the individual is entering a new home or workplace. Since constant one-to-one support can foster dependence, it is usually helpful to begin to fade support as soon as possible. It is critical to note that when fading begins, it needs to be done in a systematic and gradual fashion. It may not be possible to fade support on the first attempt, but over time a gradual reduction in support and increase in independence can often be achieved.
Virtually everyone interviewed emphasized the importance of finding compatible staff to work with individuals. In fact, it was clear that the more atypical or challenging an individual, the more important it is to try to identify staff they will be compatible with, and the bigger the positive impact of matching these people. Unfortunately, there is no recipe or “test” for identifying these potential matches. Providers sometimes find it useful to ask prospective staff members about their leisure interests and hobbies. Often it is a matter of trying out different staff members with different individuals, until there is a good fit.
Finding compatible roommates is critical to the happiness of anyone who lives with other adults. It is helpful if the individuals have common leisure interests, tastes, and other preferences. We do assume everyone will have his/her own bedroom, so personal hobbies and decorating preferences can be easily accommodated. But some individuals will have issues that will tend to create conflict if not well tolerated by their roommates. Someone who immediately puts away any items that are out of place in the kitchen will only antagonize a roommate who likes to get out all the pots and pans before beginning to cook! One strategy employed is to have a prospective new roommate visit several times for dinner or the like, to see how things go.
The development of natural supports in the community must also be encouraged. As clusters of potential natural support providers are identified (e.g., a group of fellow employees or neighbors within an apartment complex), it is a good idea to provide them with 4-8 hour mini-workshops to give them some basic orientation and information. This has been a very successful strategy for the Judevine Center.
The availability of a range of support options is just as critical when we look specifically at the area of employment. Division TEACCH uses the following models: individual, or standard placement, which has one individual working with intermittent job coach support; shared support or “dispersed enclave” which has several individuals working in different positions dispersed throughout a business, with the support of one job coach; a “mobile crew” option which consists of several individuals moving from site to site doing similar jobs (e.g., house cleaning, landscaping) with one job coach; and finally, a one-to-one model of job coaching for an individual. While this is certainly not an exhaustive list of the possibilities, it gives a sense of the range that may be developed.
4. Provide effective individualized transition planning for alternative living and employment situations as needed.
A major feature of autism is difficulty with transitions. Thus, the saddest stories are about crisis situations, involving the death or sudden illness of a parent that required a change in the individual’s placement on an emergency basis. Such situations exemplify the wrong way to transition someone! Transitions needed to be planned and carried out gradually, and it does not work for too many factors to change at once. Another problem with transitions was reported for the St. Louis, MO area by Judevine Center. The staff there noted that students leaving the school programs may have job placements in their last year of school but are required to give them up and cannot transition with the job. Needless to say, this makes for challenging transitions to adult services!
In the area of employment, the positive side of difficulty with transition is that individuals on the spectrum may show better job retention and more resistance to boredom from repetitive work than their non-identified peers. We heard anecdotal reports from employers to this effect. On the other hand, the fact that transitions that do take place are difficult means that they need to be handled with great care. For the individual, preparation can include visits to prospective living or employment settings, spending small amounts of time with prospective staff in non-stressful activities, and providing information about transitions and transition schedules in a form which allows for repeated access by the individual, such as in written or picture form. Staff should also prepare themselves by learning what they can ahead of time in ways that do not directly involve the individual. At CSAAC the job developer works on a new job by himself for two weeks before transitioning an individual into the position. This way, he knows exactly what is required, as well as having developed relationships with the co-workers and supervisor. Such preparation eases the way for the individual when he arrives. Another very successful approach for transitioning staff is to have a new staff member observe or work side by side with a departing staff member.
In the state of North Carolina, the Department of Vocational Rehabilitation recognized the specialized expertise required for the transition from school to employment in a different way. Rather than having the DVR staff handle these transitions, the department contracts with Division TEACCH to provide them. In this manner, the specialized assessment, sometimes extensive period of job development and initial intensive training can all be handled within Division TEACCH, thus allowing eventually for a seamless transition into TEACCH job coaching support.
5. Provide support to access community medical and dental care.
Often a routine visit to the doctor or dentist can be anything BUT routine for individuals on the autism spectrum. The lack of understanding about what is happening is compounded by communication problems, fears about pain, and the inevitable intrusions into personal space. The additional range of sensory issues, such as distress over the buzzing of a dental drill, or the sharp smell of an antiseptic, can also provoke intense reactions. It is critical to first identify an understanding doctor or dentist, hopefully with experience with this population, or, lacking that, someone who is willing to learn. Preliminary visits in which no care is provided, but the individual is allowed to become familiar with the strange setting, may be very helpful. Sensory supports such as listening to music on a headphone may be necessary during the procedure itself. And it may be very helpful to plan a highly reinforcing activity to take place immediately after a successful doctor or dentist visit. All of these accommodations may require staff support and potentially consultation with a behavior and/or communication specialist.
6. Support and teach individuals with autism to access transportation, including the DART (regular) bus and DAST (special transport).
Individuals need to be able to access transportation as independently as possible. Effective transportation use means access work sites, as well as all community activities, including leisure activities, domestic errands, continuing education, and religious and spiritual life. As parents age, it may become necessary for the adult son or daughter to travel to them rather than vice versa. All options must be pursued. Assuming the individual is within walking distance of a bus line (which must be a priority, see Recommendation C. 1) they may be able to learn to take the bus independently. Even when staff support is needed, taking the bus is a good option because it diminishes the need for dedicated vehicles with all of the complications they entail. DAST can also be used for individuals who can ride without additional staff assistance but whose skills do not allow them to utilize the bus system.
B. Recommendations for individuals living with their family
The most cost effective service is to provide supports to individuals who live in the family home. When appropriate services and supports are provided, families are able to maintain their loved one for many years before residential services are required. Families should not be expected to be caregivers 24 hours per day, seven days per week. This creates undue stress on the caretaker, and does not promote independence for the individual.
1. Individuals and their families must have home and community access to the professional supports listed in Recommendation A.2 above.
As a practical matter, there should be no difference in where the individual is living when it comes to receiving these types of supports. Living with family does involve a different set of strengths and challenges, however. Among strengths, it is frequently found that families have had a long time to develop strategies that work. They may also be more tolerant of behavioral challenges. On the other hand, some problems may be more entrenched due to long histories. In these cases, one of the primary functions of professional supports in the home may be to help assess what can be tolerated and what needs to be changed; and ultimately, when it may be necessary for the individual to begin to transition to another living situation. To the extent that professional consultation makes it possible for the individual to live more successfully with their family; thus, prolonging the interval before they need to move out, professional consultation can be very cost-effective.
2. Families must have in-home support staff so that they can keep their adult son or daughter living at home with them. This includes support before and after the workday, as well as weekend support. The goals of staff support will be to help the individual participate in daily living skills, community activities, including those with peers, and special family activities such as weddings.
Several providers in this study do support some individuals living with their families. They found this option to be quite cost-effective because in these cases staff is needed only for specific times of the day or on weekends. Only rarely was support required around the clock. When this level of support was required for an extended period of time, it was usually deemed necessary to bring the individual into a staffed living situation. As an example of the average amount of support required by a family, the Autism Services Center in West Virginia has found that families average about 32 hours per week of in-home support.
C. Recommendations for individuals living out of the family home
The group home is the option of choice for many families, but individuals with high levels of functional and communicative skills, who want alternative options, are entering adult services as well. There should be options that acknowledge these levels of skills and desires for a home with fewer individuals.
1. There must be a range of options that includes apartments, townhouses, and homes. Location of housing is key, including accessibility to public transportation and community resources (e.g., shopping, banking, etc.).
Options are needed so that individual preferences and needs can be accommodated. Apartments and townhouses can provide a natural community. Individuals can meet their neighbors at the mailbox or while entering the building. The location of housing is critical. Location near bus routes and/or within walking distance of community resources is especially valuable in that it eases transportation complications. With the right location, the most independent individuals may well be able to access many community resources without staff assistance.
A different set of considerations is important with regard to group homes. There are always potential issues with acceptance by neighbors. The following are some pointers we heard from programs we visited:
1) Autism Services Center prefers corner locations because they enhance staff parking and maximizing distance from neighboring homes. They also suggested that the houses chosen should be among the best in the neighborhood.
2) Several programs recommended that individuals living in a home be active within the neighborhood doing volunteer work such as neighborhood clean-ups. 3) Judevine staff recommended that “welcoming, diverse” neighborhoods be chosen.
Opinions differed on whether it was best to rent or buy the homes.
2. Adults should be able to live alone or with no more than two roommates with whom they are well matched and compatible.
Having their own apartment is viewed as a hallmark of independence by many young adults. Further, living alone may be an even stronger preference for some individuals on the autism spectrum than for those in the general population. If there are to be roommates, a total of two or three individuals seem to be optimal in terms of sharing space without getting in each others’ way. Two or three individuals living in a home or apartment generally will also require the presence of at least one or two staff members much of the time, and more than six adults in the same living unit begins to appear crowded. At that point, people begin to be disturbed by competing stimuli and simple lack of space. Compatibility can be measured in two ways: 1) two or more individuals may literally share similar interests and general activity patterns, or 2) individuals may not literally be compatible, but if at least one or two are very tolerant of potentially disruptive behavior by a roommate, then the twosome or threesome may still be compatible overall.
3. There should be flexible staffing options ranging from: 1:1 to 1:4 staffing; use of roommates without disabilities who have specified duties, drop-in support, neighbor support, or an individual living with a host family.
Following are specific examples of options seen just to give an idea of the range of possibilities that can exist: At the Jay Nolan Center, as well as at the Institute for Applied Behavior Analysis (IABA), many of the individuals who require 24-hour support have a live-in, non-disabled roommate. These roommates generally work with the individuals for an evening shift from Monday through Friday, but are off-duty the rest of the time. Since they live in the same unit, they may provide informal support at other times. Usually the individual has a daytime staff member who shows up in the morning, helps with the morning routine, and goes with them to whatever their daytime schedule calls for. On the weekend, there is a variety of schedules. One option is a staff member who works 48 hours, including sleeping over Saturday and Sunday nights.
For those who live alone in an apartment, Judevine described a novel “support neighbor” concept. An individual gets free rent and utilities in a neighboring apartment in exchange for specific duties. The target individual’s apartment always has a 2nd bedroom so that someone can stay there in case of a crisis or when the support neighbor is out of town. The support neighbor is paid extra for any non-routine duties, such as time involved when there is a crisis.
D. Program level recommendations
We encourage the development of local programs with small administrative structures to support adults in ways that are individualized, flexible, and responsive to individual preferences and family concerns. Programs must be responsive to local needs. They should not rely on decision making, budget restrictions or staff decisions made by out-of-state administrations.
An attribute of seven of the eight programs visited is that they were local with lean administrative structure and strong leadership. We found that local providers are positioned to be most sensitive and responsive to local standards, staff issues, expertise, and funding opportunities. In part due to Delaware’s small size, we have several providers based out-of-state, thus requiring out-of-state administrative oversight. This makes it more challenging for effective family input and consumer choice to be considered in delivering services. Because of our small size, providers based within Delaware will naturally have small administrative structures. The same advantages of small size that currently allow for statewide consistency in programming for birth through 21 can then also come into play for adults.
1. Small and mid-size providers can and must ensure supports that are family driven and organized around a strong “individual/family centered” philosophical orientation. This is best accomplished by including family members at all levels of program development, governance, and oversight.
Family members are in the best position to remain focused on the highest priority: the well-being of each individual. When involved at all levels, they can work to keep this at the forefront whenever policies are made and implemented.
2. Providers must have practices that are evidence-based, with goals set for their use, and regular review of progress toward attainment of these goals.
Practices must be consistent with current knowledge in the field and based upon data. There must be a system in place for regular review of progress. The Institute for Applied Behavior Analysis (IABA) in Los Angeles has such a system with two levels of data-based review taking place. One was a team-level review, and one was a review of the program of a specific individual. In each case, there was a list of quality standards, each of which had operational definitions. Each was reviewed and marked as achieved or not achieved. This particular system is available for purchase by users outside of IABA, and the reader is referred to the IABA visit notes in the appendix for a reference to learn more about this system, which is called the ePSR or e-version of the Periodic Service Review.
Data collection is frequently seen as an unpleasant, challenging task. Data collection systems need to be designed with the involvement of the staff that will be using them. They need to be portable, quick and easy to use, and provide data in a form that can readily be summarized and analyzed. It is also important that staff see that the data they collect is actually used when decisions are made.
Delaware’s status as a small state with a major university and university center for excellence provides creates the potential for research to help develop new evidence-based practices. With the newly funded Edelsohn Chair of Adult Services, housed in the College of Human Services, Education and Policy, there is a great opportunity to be innovative and expand knowledge.
3. Providers should establish a range of options for employment that include varying levels of paid and unpaid employment options.
Because autism spectrum disorders are so individualized and uniquely manifested across individuals, employment opportunities must also be widely varied and specifically targeted to the local economy as well as to the individuals. Assessment tools must be enhanced to consider communication, social skill, behavioral, and sensory needs. The job match is just as critical as the match between the individual and the job coach. Placing a person with sound issues in a noisy dish room will not be a successful match.
This study defines a day as having eight hours of meaningful activity. For a few, this might mean a 40-hour work week; however, our review of programs indicates that it will more frequently mean a 20-hour work week with other activities also in place. The goal for most will be to make a good job match, build hours, work tolerance, and hopefully a career. We also recognize that for some, employment will be more limited.
Employment options should include full time competitive employment with support, using the supported employment model of follow-along services for adults with Asperger Syndrome or high functioning autism. Long term supports needed for this group might include follow-up contact at work, and a support group or social club where individuals can meet and address work issues, learn appropriate social skills, and have fun. This promotes a full life, alleviates loneliness, and gives these individuals a place to seek support and assistance.
For other adults, all supported employment options will be needed, including expanding the use of supported employment models from the single job and job coach to greater use of the clustered placement model with one support person working with two or three individuals at a work site, and potentially to work crews. Work crews could readily accommodate individuals with good work skills but poor social skills, and they can be used as transitional sites—giving experience and building resumes while also teaching both job skills and job-keeping skills. Work sites must be developed that allow individuals with behavioral challenges to be accommodated, and that will use environmental approaches to alleviate behaviors. For example, jobs that are physically demanding and that require good gross motor skills such as working in warehouses, can be ideal for certain individuals. At all times, the needs of the individuals being supported must be taken into account.
Finally, while our emphasis is on work, some individuals may not have the capacity to work in the work settings that are typically available. This may be less due to cognitive or communication issues than to sensory issues. Working in the community must benefit the individual, not create additional pain or frustration. For these individuals, we must seek alternatives that allow them to grow and learn, but do not require sensory processing that can be overwhelming.
Volunteer jobs are important, and provide a meaningful way to participate in the community. For some individuals, there will be a mix of paid employment, volunteer employment, and leisure time activities during the work week. The intent should be to expand hours as work is more available, as skills grow, and as the individual asks for more work.
These types of support call for creativity and entrepreneurial approaches that have been developed across the country. They may be offered by traditional programs, through new providers, or through self-directed support corporations, which should also be a part of a systems change approach. As individuals and families determine what they want, they should negotiate with providers to meet their needs rather than to rely on a slot-based system.
4. Providers should develop a community-based option for individuals currently served in sheltered workshops. Individuals needing this option include those who have one or more part-time jobs or do volunteer work, or are between jobs. This replaces the sheltered workshop or day habilitation center model that currently exists. One such option is a “clubhouse” model, which provides access to sites developed within community colleges or the like, for various recreational and adult education programs. These options also free funding currently used for “bricks and mortar” to provide more individualized supports.
The best practice programs across the nation used available funds to provide one-to-one or two-to-one support, and did not pay for large buildings for day programs. The one exception has a very low-rent space with job samples developed that were clearly tied to community jobs (newspaper stuffing, computer stations, shelf-stocking, etc) where individuals spent time when not at their job. With these levels of support, very creative programming can be done throughout the community that is not based on using a facility. Individuals can develop their own communities within the local community college, the local YMCA, the library, and so on, creating their own structure.
5. Providers should create a range of support options for employment that include varying levels and ratios of staff support, drop-in support, and natural support for competitive employment.
This has been covered in other recommendations. Because of the unique nature of the disability, the range of employment and employment supports should be broad, flexible, and have the capacity to change as the individual’s needs change.
6. A range of support ratios to participate in these activities should be available, including flexible staff and the use of volunteers and friends.
As noted in recommendation D-3, the range of employment options requires a range of support options. The best practices programs offered one-to-one support for individuals at the severe end of the spectrum across their day, as well as one-to-two support at specific job sites. There must be flexibility built into the system to increase or decrease support as needed. In Delaware, we are more inclined to work with individuals with more severe autism. With the numbers of young adults with a greater skill level increasing, there should be more options across settings and disability level. First, it is critical to maintain the skill levels that these young adults have achieved, so it is important not only to provide adequate support, but to have staff that are trained about autism and its characteristics, the use of communication systems, behavioral supports, social skill needs, and sensory issues. It is our recommendation that staff support ratios remain high, paying for them by reducing administrative overhead and day program buildings, utilities, equipment, janitorial, and all the other associated costs. By using funding for staff, greater program flexibility is built into the system which allows greater use of community supports such as neighborhood centers, churches, the YMCA, and other regular gathering places.
Staff should be deeply knowledgeable about the individuals they support, and they should be cross-trained to support more than one individual. This allows the person to feel comfortable because they always know who will be supporting them, and in cases of vacation, sick leave, and unexpected absences, there is a backup person (or preferably two) who can assist.
Friends and volunteers who have known the person over time can also be included as part of the support, particularly as individuals develop their own communities at work or in other places. While many adults with autism will always require paid support in the workplace, many others will not. Building on friends and volunteers expands the based of support available.
1. Use recruiting and hiring practices that are cost-efficient. Provide prospective staff with information so that they can opt in or out of continuing the interview process (show an introductory video; invite them to dinner with the individuals, etc.).
2. Emphasize careful matching of staff to individuals and positions.
3. Establish hiring and staffing practices that promote the development of meaningful relationships between individuals and staff.
4. Provide staff training that includes basics on autism and philosophy, plus orientation to procedures specific to individuals with whom the staff member will be working.
5. Develop staff utilization policies that encourage cross-training and horizontal job mobility as well as promoting from within.
Basic staff training need not be overly cumbersome or lengthy. In fact, many of the sites told us that they have found it most cost-effective to reverse the typical process and provide new staff with observation and orientation experiences prior to investing time in training. Thus a new staff member may first spend up to a week observing individual(s) with whom they will be working, on site with their current staff. This is then followed by training. In this manner, the new staff member has more informed questions, and can use the training to prepare for their specific job assignment as opposed to a general, abstract assignment. And the cost-effectiveness results in the possibility of new staff members who would not be a good fit recognizing this and opting out (or being directed elsewhere) before there is a significant investment of staff time. Another cost-effective strategy, utilized at the Institute for Applied Behavior Analysis (IABA), was to develop a series of self-contained training modules for staff to study on a flexible schedule, within certain timelines. IABA also has staff start by overlapping shifts with trained staff before they ever work solo.
F. State level recommendations
There need to be more options for families who want to remain in control of their adult child’s supports, including family consortiums for living arrangements, individual budgets, supports brokers, self-directed support corporations, and fiscal intermediaries. The state also needs to set a strong policy about service sand supports, and provide concentrated technical assistance to state agencies and community providers who support individuals with autism.
1. Create an autism services office. The mission of this entity will be to promote individualized and need-specific service development, assure accountability to state agency and program providers, provide technical assistance to local programs, identify and coordinate funding sources, and build capacity within local programs. The office may be housed in one state agency, or may be a separate non-profit, but it should provide leadership and support to all state agencies that provide services and supports to adults with disabilities. The office should be staffed by experienced professionals who can both provide for and arrange technical assistance to programs, families, and individuals.
This entity will also be charged with developing additional academic training for line staff and professionals statewide, through formal classes and curricula, the internet, etc. One of the first missions of this entity will be to develop and begin to use a meaningful philosophy, which will then be used in developing new providers, recruiting and training staff, developing support options, etc. It may be possible to contract with a nonprofit provider for some of these functions.
An Office on Autism would be charged with providing leadership, establishing a statewide philosophy, and enhancing current capacity within and across state agencies and the provider network. This office would also provide technical assistance and support to generic programs such as Unemployment, Social Service, and the Court System –particularly when addressing the needs of individuals on the spectrum who may not be receiving state services. Likewise, it could provide training, technical assistance, and trouble-shooting supports to the DDDS network of case managers and provider agencies. As more students transition into adult services across the state, current providers will be called upon to provide services and supports and will need training and technical assistance to do so. The use of a circuit rider consultant (meaning someone who supports community programs on a regular basis) can be a very effective way of enhancing local programs.
In Delaware, we need to call upon state agencies to expand their collaborative agreements to coordinate and share responsibility for providing and funding supports for adults with autism spectrum disorders, to expand services to address the needs of individuals with Asperger Syndrome, to expand services to address the needs of those who are dually diagnosed, to participate in joint employment efforts, to jointly seek technical assistance, and to provide leadership to address the needs of this population. Currently most adults receive services through the Division of Developmental Disabilities Services and (DDDS) their community provider network; some adults receive more limited services through the Division of Vocational Rehabilitation (DVR), and a few may receive services from both agencies. This calls upon agencies to review current policies and practices to accommodate the employment needs of adults with autism spectrum disorders. For example, in Delaware, the Division of Vocational Rehabilitation only supports the individual job coach model. Best practices often has a clustered placement, with one job coach supporting two or even three individuals at a job site. This promotes independence, yet also assures that adequate supervision and support is in place. We would call upon DVR to re-think their supported employment policies to come in line with other models of employment service that meet the needs of individuals with more severe disabilities. Likewise, we would call upon the Division of Substance Abuse and Mental Health to revise their eligibility criteria to address the mental health requirements of this group. Advocates are working on these issues, but a Office on Autism could serve as a planning and implementation organization.
Another priority for this office, for the state, and for the provider community is to develop and maintain a philosophy. No matter what their size, the programs visited that we considered to be best practices had unique and meaningful philosophies. Even more significant, the staff at all levels was able to articulate those philosophies. The philosophy reflected the individual “personality” or priorities of each program. For example, Bittersweet Farms uses the term “MAPS” for their philosophy. The letters stand for “Meaning and Motivation,” (teach the meaning of the activity, use motivation); “Aerobic Activity,” “Partnership with Purpose,” (share the work with the individual); and “Structure and Support” (emphasizes visual schedules, sequencing, and communication. A philosophy like this certainly fits the setting for Bittersweet Farms, and it is easy to see how a staff member could refer back to this for practical guidance in planning activities. These kinds of philosophies serve to maintain program consistency over time. To the extent that a clearly-articulated philosophy helps prospective staff identify whether or not they are a good fit with the organization, it adds to efficiency in hiring.
There must be family involvement and oversight no matter where the office is housed. It is important that such an office be overseen by a council composed of parents, experienced professionals, and advocates, whether it is housed at the state level or in a private non-profit.
2. Augment the state’s rate setting process to support the unique needs of individuals with autism.
The Division of Developmental Disabilities Services has been actively working to develop funding rates and mechanisms based on individual need. One of the challenges is to adequately understand all the supports that adults with autism need, which can be significantly greater than other individuals in the DDDS system. As previously noted, adults with autism require significant clinical services, including behavioral supports and adequate data systems and oversight, communication systems and speech therapy, sensory supports, and medical oversight. When these supports lag, skills that have been developed through the educational system can quickly dissipate, leading to deteriorating behaviors and a need for crisis intervention and even greater level of supports. Embedded in this recommendation is the earlier recommendation regarding transition. These supports must be noted, understood, planned for, and budgeted prior to the individual entering the adult system. When done effectively, as Delaware has generally done through its Special Populations program, transition can be smooth, skills can be maintained, and behavior can continue to improve. With more individuals entering community programs that do not have these supports in place or a clear knowledge and understanding of them, lost skills and deteriorating behavior become more likely.
3. Expand the definition of eligibility to include Asperger Syndrome.
Adults with Asperger Syndrome typically have academic and work skills that can lead to a life of independence. It is their issues with social skills in the work place and difficulties with functional life skills that interfere with their successful achievement of independence. Appropriate supports at work and at home can be both cost effective, eliminating the need for Social Security or SSI, and result in an independent and productive life.
Currently adults with Asperger Syndrome are not eligible for most adult service agencies serving individuals with disabilities because this disability is not considered to be a cognitive or a mental health issue, despite the fact that it is a lifelong disability requiring supports. This will most likely require legislation to assure ongoing funding.
Effective programming will require additional knowledge about Asperger Syndrome itself, as well as appropriate services and supports required by these individuals. This is not always clearly known or understood, and is not typically available in the service provider or mental health network. While this situation is not anyone’s fault, due to the fairly recent recognition of Asperger Syndrome as a diagnosis and part of the autism spectrum, it will require some in-depth planning to address on a statewide basis. It also calls for a closer working relationship with mental health organizations to expand their services to address the mental health needs of adults with autism spectrum disorders due to the high co-morbidity of Asperger Syndrome and mental health.
4. Develop and implement practices and financial incentives that encourage small, “homegrown” providers to start providing supports. The biggest challenge to small providers is likely to be the substantial start-up investment required, so this is where incentives will be needed across state agencies serving adults with disabilities.
Small non-profit programs with lean administrative structure offer these benefits:
Start-up for non-profit service organizations, just as for business, is expensive. State payment can be very slow; thus there is a need for the state to assist small programs in the planning and development phase, and to provide adequate “up-front” funding while the program is developing and in early implementation stages. Further, the costs of supporting adults with autism can be higher due to the need for greater clinical services, greater staffing ratios, the requirement for more training and better trained staff and the increased salaries that requires. The state can also develop financial incentives that reward programs that meet quality indicators, and reward community programming and employment over traditional services such as sheltered employment and day services.
5. Use the “support broker” model and a personal budget to build supports around the individual’s needs base.
The family support movement of the past decade has shown over and over that flexibility and decision making are the keys to consumer and family satisfaction. Models around the nation have found that the use of individual budgets and support brokers can actually save money, and provide more individualized, flexible and appropriate supports rather than just supports that are readily available. There will never be a time when every adult with disabilities has all the funding s/he wants or needs; however, when individuals and families can use funds to meet the needs and desires that are most critical to them, they can make choices about what their priorities are and use funds targeted to those priorities. Support brokers are able to negotiate services and supports, and can terminate them when they do not work effectively, thus alleviating the barriers and constrictions of the current practice of annual contracts. For accountability purposes, individual budgets and reporting are also much more transparent than large contracts to provider agencies.
6. Direct support funds to follow the individual through the use of a range of mechanisms, including fiscal intermediaries, support brokers, self-directed support corporations, family consortiums and other models that allow the individual and/or family to control the use of public dollars being spent.
Again, the emphasis is on flexibility and individual and family preference. Some families will want to develop a self-directed support corporation and direct all funding and services themselves, including hiring and supervising staff. Others will want to hire a support broker who can negotiate services and supports with existing vendors and provide quality assurance. Still others may want to work with other families to develop a family consortium to support a residence or even a small agency, and finally, some will want to use the current service delivery system. Again, this promotes individual and family satisfaction, because it matters less which model is chosen. The critical factor is that the individual and family choose the model that best meets their needs.
The fiscal intermediary provides the mechanism to pay for staff, specific services and supports, equipment, and other needs; and it provides the level of accountability that is required when using either public funds, or even funds that are raised privately. The fiscal intermediary should also become knowledgeable about Medicaid waivers, Social Security, and all other state and federal funding mechanisms, what the law requires, how benefits are impacted by income, and so on. By housing this information with central or even regional fiscal intermediaries, families have technical assistance available to guide them through funding and programmatic decisions.
Overall, our review of the literature, interviews, and study of exemplary programs indicates that “Best Practice” requires:
Where do we go from here?
It is our consensus that the following steps should be our first priorities:
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Autism Society of America (2001). Position paper on The National Crisis in Adult Services for Individuals with Autism. Retrieved April 26, 2005, from http://www.autism-society.org/upload/images/AdultServices.pdf
Autism Society of America (2005). Autism Facts. Retrieved March 4, 2005, from http://www.autism-society.org/site/PageServer?pagename=Autism_Facts.
Holmes, D. (1998). Autism through the lifespan: The Eden model. Bethesda, MD: Woodbine House.
Jarbrink, K, & Knapp, M.R.J, (2001). The economic impact of autism in Britain. Autism, 5 (1) 7-22.
Koegel, R. & Koegel, L. K. (1996). Teaching children with autism: Strategies for initiating positive interactions and improving learning opportunities. Baltimore: Paul H. Brookes.
Pennsylvania Autism Task Force (2004). Autism Task Force Report. Retrieved January 31, 2005 from http://www.dpw.state.pa.us/General/AboutDPW/SecretaryPublicWelfare/AutismTaskForce
Powers, Michael D. (2003). Asperger syndrome and your child: A parent’s guide. New York: HarperCollins.
Quill, K. A. (1995). Teaching children with autism: Strategies to enhance communication and socialization. New York: Delmar.
Summary of observations for programs visited
Contact: Ruth Sullivan
1. Agency: Autism Services Center
Phone Number: 304-525-8014
E-mail:
Date: December 9, 2004
1. We are interested in identifying best practices and current policies in services for adults with autism, including high-functioning adults and those with Asperger Syndrome. Since this represents a wide range of adults and skill levels, please briefly describe your target population.
They serve 80 adults with autism. They appeared to have people across the whole range of severity and cognitive functioning.
2. What are the programs that your agency provides for these adults?
Most of the adults served are in their family’s home with support. Support in the family home ranges from 5 hours/week to 24 hours/day. (24 hours/day would be only on a temporary basis). A typical pattern would be support from approx. 4 PM to bedtime and maybe 8 hours per day on the weekend. They also provide staff for these family homes for emergencies, or 24-hour staff if the parents want to take a vacation.
They also have group homes with 3 people in a home.
Also provide employment and other daytime programming.
3. What are the elements of these programs that you can consider to be best programs that you consider to be best practice? What areas do they need improvement in?
They feel their strengths are their 1:1 staffing ratio, and the “seamlessness” that comes from not having to separate day and residential programs (they are allowed to use Medicaid waiver money for job coaching in WV).
4. Do you have any policies in place that promote best practice either through state government, local government, or company policy?
5. How do your programs address the domains of:
a. Residential The family support option was discussed under item #2. The group homes have 1:1 staffing. Individuals participate in activities such as cooking, cleaning, but there did not appear to be a major training component here. Rather, the focus appeared to be to provide high quality of life, along with a typical pattern of coming and going across the day. There were a lot of checklists for management of the homes, e.g., to make sure the towels were folded properly, kitchen sink left clean, etc. etc. This helps the staff be consistent.
b. Employment: 20 adults are in paid jobs that may be part-time or full-time. Jobs include clerical work at the ASC office, restaurants, hotel cleaning, YMCA cleaning, a nursery school cleaning. Those not in paid employment have volunteer positions at hospitals, churches, parks, etc.
c. Social Skills/Support
d. Recreation/Leisure Time
e. Behavioral Supports: Positive behavior support explicitly used, with an emphasis on identifying antecedents. However, it was noted than in emergencies restraints may be required.
f. Communication: no explicit emphasis here. We saw a number of people who appeared to have functional speech, but in one home two men are nonverbal and don’t have a way to express their needs and wants.
g. Sensory
h. Self-Determination
6. What are the typical costs of your services and how are they funded?
This is an ongoing challenge. As far as the residential homes, they used to have enough funding to supervise them 80 hours per week, now it’s down to 40 hours per week. But at least the 80 hours per week they had before allowed them to set up systems that can now be maintained. The manager offices are in the homes themselves, which makes monitoring a lot easier. They actually lose money on the group homes, but make money on the family support option, so that they can afford to continue to run the group homes at a loss.
They have also used grants. They had a supported employment grant, also a special grant to give staff incentives to help find jobs for supported workers. They also have an incentive system for staff to recruit other staff. If someone they recommend is hired, they get an initial bonus if they stay 3 months, and a second one if they stay a full year.
7. What collaborations are in place across other agencies? Support systems? Incentives?
8. What is the transition process from school-age programs to the adult services you provide, and how well is it working?
Sometimes they are serving a child in the family support model, and then they become an adult, and of course this is an easy transition. It didn’t sound like they “recruited” new clients by coordinating with the schools because they already have more people wanting service than they can provide for now.
9. What skills do you feel staff should have to work with your target population, and what training, if any, do you provide your staff?
Overall, staff get an 8-week curriculum. New staff get 25 hours of classroom training. Then there is ongoing training once a month. They stress their philosophy heavily in the training, plus habilitation, communication, and positive behavior support.
10. What kinds of services are in place to assure maintenance of successful outcomes over time, and/or intervene early if problems begin to develop?
They use direct observation by the manager staff as their primary form of monitoring.
11. What other resources do you recommend?
Other recommendations: “learn the state Medicaid system” “waivers are re-written every 5 years, and we should stay abreast of this process”. Try to get reimbursement in per diems as opposed to 15-minute increments. Supervisors need sufficient hours to supervise. “70% of costs are going to be staff costs”
Contact: Victoria Obee-Hilty
2. Agency: Bittersweet Farms
Phone Number: 1-877-879-0254 ext. 209
E-mail: vobee@bittersweetfarms.org
Date: January 12, 2005
Visited by Susan Peterson and Karen Bashkow
--We are interested in identifying best practices and current policies in services for adults with autism, including high-functioning adults and those with Asperger Syndrome. Since this represents a wide range of adults and skill levels, please briefly describe your target population.
They serve 41 people with autism in their day program, 20 of these people living on campus and 8 of them in supported living. They serve a range of adults with autism.
--What are the programs that your agency provides for these adults?
Day program in “farmstead model” that provides structured day with choice of programs including greenhouse, woodshop, animal care, landscaping/gardening, kitchen/janitorial, print shop, weaving and arts and crafts. Residential program includes dorm-style living for 15 people, and a “co-op” for 5 (they do more of the chores and their own decision-making about running the house). Also supported living in nearby communities for 8 people (we did not see this).
--What are the elements of these programs that you can consider to be best programs that you consider to be best practice? What areas do they need improvement in?
Our philosophy is very strong. We believe in building a sense of community, in engaging in productive work, that relationships between the people we serve and our staff are very important.&