Adults with Autism Need a Good Quality of Life
For those interested in exploring quality of life issues fully, go to our website at www.myarchway.org and Join ARCHway. Also go to our social networking site at www.myarchway.ning.com
Below, a parent of a teenager with autism gives a very detailed and excellant description in simple, every day terms of quality of life factors that contribute to a very good life for people on the autism spectrum.
This article is taken fully from: An Alternative View on Outcome in Autism – Written by Lisa Ruble and Nancy Dalrymple, Focus on Autism & Other Developmental Disabilities, Spring, 1996. Vol 11, Issue 1. For full article, go to: http://www.starautism.louisville.edu/images/pdf/rubleanddalrymple1996.pd...
A person with autism should participate in activities with family members or close friends (e.g., travel, eat out, shop, favorite games or activities, church, dinners). Included in family/close friends’ events and passages (e.g., holiday gatherings, weddings, funerals, births, birthday celebrations, illnesses and accidents). Contact with family members and friends as frequently as desired (e.g., make and receive phone calls, write and receive letters, send and receive cards, visits, invitations.)
A person with autism should be active and comfortable in familiar community:
Ride transportation, walk, ride with family or friend, ride bike;
Shop for groceries, clothes, gifts, cards, crafts, needed equipment, personal
Choose movies, videos, places to eat out, ordering in;
Go to special events: sports, circus, shows, movies concerts;
Participate in the YMCA, bike club, or other interest or philanthropic clubs.
A person with autism should work at a valued job to earn money:
Like job and feel good about doing it;
Supported by people on the job;
Can do job competently; know performance is good.
A person with autism should enjoy good health and wellness through proper nutrition, awareness of weight management, and access to appropriate medications when and if needed.
A person with autism should have own special possessions and personal space to keep as desired and has time and space to be alone when desired.
A person with autism should makes choices about purchases and manages own money to the greatest extent possible.
A person with autism should receive enough information to make valid choices and not have to refuse them because of lack or information, lack of experience, or lack of support.
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Thursday, March 18, 2010
Why does Augmentative and Alternative Communication (AAC) Work so Well for People with Autism?
Why does Augmentative and Alternative Communiation (ACC) work so well for people with autism?
In a leading book on AAC by Joanne Cafiero, PhD, Meaningful Exchanges for People with Autism, www.woodbinehouse.com, Dr. Cafiero talks about all the ways AAC fits people with autism well (page 26)
Most people with autism are visual learner - AAC uses visual cues
Many people with autism are interested in inanimate objects - AAC tools and devices are inanimate
Many people with autism have difficulty with complex cues - Level of complexity can be controlled so AAC grows with the child
Many people with autism have difficulty with change - AAC is static and predictable
Most people with autism have difficulty with the complexities of social interaction - AAC provides a buffer and bridge between communication partners
Some people with autism have difficulty with motor planning - AAC is motorically easier than speech
Many people with autism experience anxiety - AAC interventions don’t apply pressure or stress (when introduced properly)
Many people with autism present behavioral challenges - AAC provides an instant means to communicate, preempting difficult behaviors
Many people with autism have difficulty with memory - AAC provides means for language comprehension that relies on recognition rather than memory.
On page 33, Dr. Cafiero lists the benefits of AAC for individuals with autism:
May stimulate brain development
Supports functional spontaneous communication
Facilitates access to social information
Facilitates inclusion at home, school, and community
Facilitates greater independence in the home, school, and community
Facilitates access to literacy experiences
Preempts the need to develop aberrant communicative behaviors (reduces meltdowns) Provides voice and ears to people with autism, including psychological benefits of better understanding others and being understood
Facilitates an improved sense of self concept due to greater independence and fewer outbursts
Is an augmentative communication device only appropriate for who are non-verbal?
Speech Generating Devices (SGDs) are programmed to provide a functional and effective vocabulary for any individual with communication problems, regardless of age or diagnosis. There are no cognitive, behavioral, or language prerequisites required for most augmentative communication interventions. Nearly anyone can benefit from augmentative communication tools and strategies.
SGDs are intended to enhance existing functional communication by:
1) Clarifying vocalizations, gestures, body language, etc.
2) Expanding the language of limited speakers by increasing their vocabulary to include verbs, descriptors, exclamatory comments, etc.
3) Replacing speech for people who are nonverbal;
4) Providing the structures and tools to develop language.
To learn much more about augmentative communication devices (speech generating devices) for people with autism, go to www.myarchway.org and click on the menu choice called Augmentative Communication.
There you will find a broad table of contents on this subject including:
Why does Augmentative and Alternative Communication (ACC) work so well for people with autism?
Is an augmentative communication device only appropriate for people who are non-verbal?
How do augmentative communication devices work?
What are the ranges of topics an AAC user can communicate about using an augmentative communication device?
Where can I learn about the many different types of AAC Devices?
If my child learns to use an Speech Generating Device (SGD), will they become overly dependant on the device to communicate and will they stop using the words and functional spontaneous communication they already have?
How much do these SGDs cost and will my private insurance cover the costs?
Where can I go to learn about and actually try out a variety of ACC devices?
Are there helpful websites about AAC strategies and topics?
Where can I receive advice, consultation and an AAC assessment on which particular SGD will best serve my child’s needs and where can I be trained on how to use a device?
Are there Speech and Language Pathologist jobs in Maryland where training is provided on AAC?
For those interested in finding community housing options for adults with autism as part of life planning, go to www.myarchway.ning.com and join ARCHway. You will be invited to participate in free webinars in the near future on developing community housing options for adults with autism.
To see our public service announcement that has been seen by nearly 15 million people to date, go to You Tube and search the term "autism housing" or go to: http://www.youtube.com/watch?v=Jtdo6Zh4ok4
Karen Kaye-Beall, director of ARCHway-FAST
In a leading book on AAC by Joanne Cafiero, PhD, Meaningful Exchanges for People with Autism, www.woodbinehouse.com, Dr. Cafiero talks about all the ways AAC fits people with autism well (page 26)
Most people with autism are visual learner - AAC uses visual cues
Many people with autism are interested in inanimate objects - AAC tools and devices are inanimate
Many people with autism have difficulty with complex cues - Level of complexity can be controlled so AAC grows with the child
Many people with autism have difficulty with change - AAC is static and predictable
Most people with autism have difficulty with the complexities of social interaction - AAC provides a buffer and bridge between communication partners
Some people with autism have difficulty with motor planning - AAC is motorically easier than speech
Many people with autism experience anxiety - AAC interventions don’t apply pressure or stress (when introduced properly)
Many people with autism present behavioral challenges - AAC provides an instant means to communicate, preempting difficult behaviors
Many people with autism have difficulty with memory - AAC provides means for language comprehension that relies on recognition rather than memory.
On page 33, Dr. Cafiero lists the benefits of AAC for individuals with autism:
May stimulate brain development
Supports functional spontaneous communication
Facilitates access to social information
Facilitates inclusion at home, school, and community
Facilitates greater independence in the home, school, and community
Facilitates access to literacy experiences
Preempts the need to develop aberrant communicative behaviors (reduces meltdowns) Provides voice and ears to people with autism, including psychological benefits of better understanding others and being understood
Facilitates an improved sense of self concept due to greater independence and fewer outbursts
Is an augmentative communication device only appropriate for who are non-verbal?
Speech Generating Devices (SGDs) are programmed to provide a functional and effective vocabulary for any individual with communication problems, regardless of age or diagnosis. There are no cognitive, behavioral, or language prerequisites required for most augmentative communication interventions. Nearly anyone can benefit from augmentative communication tools and strategies.
SGDs are intended to enhance existing functional communication by:
1) Clarifying vocalizations, gestures, body language, etc.
2) Expanding the language of limited speakers by increasing their vocabulary to include verbs, descriptors, exclamatory comments, etc.
3) Replacing speech for people who are nonverbal;
4) Providing the structures and tools to develop language.
To learn much more about augmentative communication devices (speech generating devices) for people with autism, go to www.myarchway.org and click on the menu choice called Augmentative Communication.
There you will find a broad table of contents on this subject including:
Why does Augmentative and Alternative Communication (ACC) work so well for people with autism?
Is an augmentative communication device only appropriate for people who are non-verbal?
How do augmentative communication devices work?
What are the ranges of topics an AAC user can communicate about using an augmentative communication device?
Where can I learn about the many different types of AAC Devices?
If my child learns to use an Speech Generating Device (SGD), will they become overly dependant on the device to communicate and will they stop using the words and functional spontaneous communication they already have?
How much do these SGDs cost and will my private insurance cover the costs?
Where can I go to learn about and actually try out a variety of ACC devices?
Are there helpful websites about AAC strategies and topics?
Where can I receive advice, consultation and an AAC assessment on which particular SGD will best serve my child’s needs and where can I be trained on how to use a device?
Are there Speech and Language Pathologist jobs in Maryland where training is provided on AAC?
For those interested in finding community housing options for adults with autism as part of life planning, go to www.myarchway.ning.com and join ARCHway. You will be invited to participate in free webinars in the near future on developing community housing options for adults with autism.
To see our public service announcement that has been seen by nearly 15 million people to date, go to You Tube and search the term "autism housing" or go to: http://www.youtube.com/watch?v=Jtdo6Zh4ok4
Karen Kaye-Beall, director of ARCHway-FAST
Imagine Giving a Voice to Someone with Autism who can not Speak
Imagine Giving a Voice to Someone with Autism who can not Speak.
The Foundation for Autism Support and Training http://www.myarchway.org/ Opened Unique Augmentative Communication Center in Montgomery County, Maryland.
Many individuals diagnosed with autism are unable to verbally express feelings, thoughts and needs. Their struggle to communicate even the most basic needs through gestures, facial expressions and body language can be frustrating and frightening to these individuals and their families. The inability to communicate effectively often presents a barrier to learning and literacy and creates significant obstacles to social and emotional development and independence.
Augmentative and Alternative Communication (AAC), also frequently called Speech Generating Devices (SGDs) or Voice Output Communication Aids (VOCAs), are devises that can provide a bridge from a life where thoughts, feelings and needs are held in silence, to a life where interaction, expression and learning are possible. “Augmentative communication devices and strategies help us understand that many people with autism have a broad range of feelings, interests, opinions and keen intellectual capacities,’’ says Karen Kaye-Beall, director of the Augmentative Communication Showroom and Demonstration Center in Silver Spring, Md., where people with autism and their families can try out a wide variety of speech generating devices. “At their deepest core, people with autism are loving people who want to have close relationships with others. They just find it extremely difficult and confusing to express the thoughts and feelings that are locked up inside.
Thus, developing and maintaining friendships is very challenging and people with autism can often feel lonely and isolated as a result of their disabilities. People often misunderstand this and believe that individuals with autism want to be alone. In many instances, that is simply not true.”
The basis of all communication is some type of language framework that must provide a vocabulary that is appropriate for the communicator’s age and the multiple settings in which the person needs to communicate, such as at home, school, job sites, and visits with friends and relatives. While adults normally have a speaking vocabulary of between 10,000 and 30,000 words, a “core” of just 100 words accounts for approximately 50 percent of words spoken. Examples of such words include: I, to, you, the, that, have, a, it, my, and, of, will, in, is, me, on, do, was. Speech Generating Devices (SGDs) are programmed to provide a functional and effective vocabulary for any individual with communication problems regardless of age or diagnosis.
There are no cognitive, behavioral or language prerequisites required for most augmentative communication interventions. Nearly anyone can benefit from augmentative communication tools and strategies.
SGDs are intended to enhance existing functional communication by:
1) Clarifying vocalizations, gestures, body language, etc.;
2) Expanding the language of limited speakers by increasing their vocabulary to include verbs, descriptors, exclamatory comments, etc.;
3) Providing speech for people who are nonverbal;
4) Providing the structures and tools to develop language.
With SGDs, a communicator just touches a labeled icon (which may be a Picture Communication Symbol or some similar graphics) on the display screen of the device, and the device will say out loud the word, phrase or sentence the individual intends to express. Users can set the “synthesized” (computer generated) voice to sound like a boy or girl, a man or woman. Also, users can record their own or someone else’s voice, which is referred to as a “digitized” voice recording.
Communicators should begin by communicating words and phrases that are most motivating and reinforcing then gradually add more and more words. Labeled icons (or buttons or cells) can be customized to each individual’s unique choices so that an SGD can be personalized and more closely express each individual’s wants and needs. For example, if a person touches the buttons for “I am hungry,” the page may automatically display a full array of food, drink and condiment choices, as well as a wide variety of restaurants in the community. “In this way, the individual is not taken to Taco Bell, when he really wants to eat at McDonald’s; he can choose mustard rather than ketchup,” says Kaye-Beall. “Little choices like these matter for a person with autism who, without AAC, has difficulty expressing even their simplest preferences. Imagine how frustrating it can be when you are so frequently misunderstood. Frustration and anger may build up, and those feelings will likely become expressed through a full range of inappropriate behaviors.” For SGD users with good typing skills, keyboards with voice output are also available.
Most high-tech devices have touch screen keyboards that allow a communicator to spell words, and most have “word prediction” features that, after a communicator types in two or three letters of a word, present several word choices. Some devices even remember the most frequently typed words and provide these words among the choices. Parents of children with autism despair that their child may be ill but unable to communicate their symptoms. With SGDs, children can learn to touch an icon to say, “I feel sick,” and the page will change to show body parts and asks the question, “Where do you feel sick?” The child will have the option to choose my stomach, my ear, my throat, etc. Sophisticated SGDs and practice will allow a communicator to express nearly anything they need or desire. The most sophisticated SGDs come already preprogrammed with 4,000-plus words and/or icons.
Here are several frequently asked questions by parents who are exploring Augmentative and Alternative Communication (AAC) strategies and Speech Generating Devices (SGDs) for their child, adolescent or adult with autism.
If my child learns to use an SGD, will he become overly dependant on the device to communicate, and will he stop using the words and functional spontaneous communication he already has?
AAC is used to enhance, not replace, existing functional language. AAC is intended to increase, maintain and improve a person’s ability to communicate by augmenting skills or providing additional support. In a leading book on AAC by Joanne Cafiero, PhD, Meaningful Exchanges for People with Autism, www.woodbinehouse.com, Dr. Cafiero reviews various studies and concludes the following: No research-based evidence exists that demonstrates that AAC interferes with speech development. In fact, research indicates that AAC actually facilitates speech by increasing communication skills and interactions and provides verbal models for speech. Since SGDs usually have visual symbols and/or icons paired with voice output, this combination increases communication in people with autism. Case study research, although limited, shows that the more visual and verbal input received by a person with ASAD, the more expressive language he or she will generate.
What do SGDs cost, and will my private insurance cover the cost?
Most SGDs are covered or partially covered by one or more funding sources. Leading SGD vendors provide staff who guide purchasers through various private insurance plan options and Medicaid requirements. Maryland maintains a low interest loan program for AAC through the MDAT Guaranteed Loan Program at 1-800-TECHTAP. The Foundation for Autism Support and Training (FAST) maintains an up-to-date price list of AAC devices and SGDs. Although FAST does not sell devices, it will refer you to vendors and coops who do sell these devices.
Where can I learn more about ACC devices, see a variety of models, and try them myself?
In the Spring of 2009, The Foundation for Autism Support and Training www.myarchway.org opened the AAC Showroom and Demonstration Center in Silver Spring, Md., the first of its kind in Montgomery County. At no charge and by appointment, any person with autism in Maryland, or any family member of a person with autism may set up an appointment to try out, learn about and play with a full range of leading Speech Generating Devices in a relaxed setting. Trained staff will be available to demonstrate devices, answer questions, and provide AAC information.
Where can I receive advice and consultation on which particular SGD will best serve my child’s needs, and where can I be trained to use a device?
In Maryland, most county school systems have departments of special education, and those departments have Assistive Technology (AT) Divisions. Call your school system’s AT Division to set up an AAC consultation. In Montgomery County, Maryland, call the Interdisciplinary Augmentative Communication and Technology Team at (301) 657-4929. or the Center for Autism Support and Training at 301-260-2777. Private services are also available through Kennedy Krieger Institute at 443-923-9200. http://www.kennedykrieger.org/kki_cp.jsp?pid=1471&bl=1
To learn more about speech generating devices go to: http://www.myarchway.org/ and click on the menu choice called Augmentative Communication.
To learn more about community living options and group homes for adults with autism, click on ARCHway on the same website.
The Foundation for Autism Support and Training http://www.myarchway.org/ Opened Unique Augmentative Communication Center in Montgomery County, Maryland.
Many individuals diagnosed with autism are unable to verbally express feelings, thoughts and needs. Their struggle to communicate even the most basic needs through gestures, facial expressions and body language can be frustrating and frightening to these individuals and their families. The inability to communicate effectively often presents a barrier to learning and literacy and creates significant obstacles to social and emotional development and independence.
Augmentative and Alternative Communication (AAC), also frequently called Speech Generating Devices (SGDs) or Voice Output Communication Aids (VOCAs), are devises that can provide a bridge from a life where thoughts, feelings and needs are held in silence, to a life where interaction, expression and learning are possible. “Augmentative communication devices and strategies help us understand that many people with autism have a broad range of feelings, interests, opinions and keen intellectual capacities,’’ says Karen Kaye-Beall, director of the Augmentative Communication Showroom and Demonstration Center in Silver Spring, Md., where people with autism and their families can try out a wide variety of speech generating devices. “At their deepest core, people with autism are loving people who want to have close relationships with others. They just find it extremely difficult and confusing to express the thoughts and feelings that are locked up inside.
Thus, developing and maintaining friendships is very challenging and people with autism can often feel lonely and isolated as a result of their disabilities. People often misunderstand this and believe that individuals with autism want to be alone. In many instances, that is simply not true.”
The basis of all communication is some type of language framework that must provide a vocabulary that is appropriate for the communicator’s age and the multiple settings in which the person needs to communicate, such as at home, school, job sites, and visits with friends and relatives. While adults normally have a speaking vocabulary of between 10,000 and 30,000 words, a “core” of just 100 words accounts for approximately 50 percent of words spoken. Examples of such words include: I, to, you, the, that, have, a, it, my, and, of, will, in, is, me, on, do, was. Speech Generating Devices (SGDs) are programmed to provide a functional and effective vocabulary for any individual with communication problems regardless of age or diagnosis.
There are no cognitive, behavioral or language prerequisites required for most augmentative communication interventions. Nearly anyone can benefit from augmentative communication tools and strategies.
SGDs are intended to enhance existing functional communication by:
1) Clarifying vocalizations, gestures, body language, etc.;
2) Expanding the language of limited speakers by increasing their vocabulary to include verbs, descriptors, exclamatory comments, etc.;
3) Providing speech for people who are nonverbal;
4) Providing the structures and tools to develop language.
With SGDs, a communicator just touches a labeled icon (which may be a Picture Communication Symbol or some similar graphics) on the display screen of the device, and the device will say out loud the word, phrase or sentence the individual intends to express. Users can set the “synthesized” (computer generated) voice to sound like a boy or girl, a man or woman. Also, users can record their own or someone else’s voice, which is referred to as a “digitized” voice recording.
Communicators should begin by communicating words and phrases that are most motivating and reinforcing then gradually add more and more words. Labeled icons (or buttons or cells) can be customized to each individual’s unique choices so that an SGD can be personalized and more closely express each individual’s wants and needs. For example, if a person touches the buttons for “I am hungry,” the page may automatically display a full array of food, drink and condiment choices, as well as a wide variety of restaurants in the community. “In this way, the individual is not taken to Taco Bell, when he really wants to eat at McDonald’s; he can choose mustard rather than ketchup,” says Kaye-Beall. “Little choices like these matter for a person with autism who, without AAC, has difficulty expressing even their simplest preferences. Imagine how frustrating it can be when you are so frequently misunderstood. Frustration and anger may build up, and those feelings will likely become expressed through a full range of inappropriate behaviors.” For SGD users with good typing skills, keyboards with voice output are also available.
Most high-tech devices have touch screen keyboards that allow a communicator to spell words, and most have “word prediction” features that, after a communicator types in two or three letters of a word, present several word choices. Some devices even remember the most frequently typed words and provide these words among the choices. Parents of children with autism despair that their child may be ill but unable to communicate their symptoms. With SGDs, children can learn to touch an icon to say, “I feel sick,” and the page will change to show body parts and asks the question, “Where do you feel sick?” The child will have the option to choose my stomach, my ear, my throat, etc. Sophisticated SGDs and practice will allow a communicator to express nearly anything they need or desire. The most sophisticated SGDs come already preprogrammed with 4,000-plus words and/or icons.
Here are several frequently asked questions by parents who are exploring Augmentative and Alternative Communication (AAC) strategies and Speech Generating Devices (SGDs) for their child, adolescent or adult with autism.
If my child learns to use an SGD, will he become overly dependant on the device to communicate, and will he stop using the words and functional spontaneous communication he already has?
AAC is used to enhance, not replace, existing functional language. AAC is intended to increase, maintain and improve a person’s ability to communicate by augmenting skills or providing additional support. In a leading book on AAC by Joanne Cafiero, PhD, Meaningful Exchanges for People with Autism, www.woodbinehouse.com, Dr. Cafiero reviews various studies and concludes the following: No research-based evidence exists that demonstrates that AAC interferes with speech development. In fact, research indicates that AAC actually facilitates speech by increasing communication skills and interactions and provides verbal models for speech. Since SGDs usually have visual symbols and/or icons paired with voice output, this combination increases communication in people with autism. Case study research, although limited, shows that the more visual and verbal input received by a person with ASAD, the more expressive language he or she will generate.
What do SGDs cost, and will my private insurance cover the cost?
Most SGDs are covered or partially covered by one or more funding sources. Leading SGD vendors provide staff who guide purchasers through various private insurance plan options and Medicaid requirements. Maryland maintains a low interest loan program for AAC through the MDAT Guaranteed Loan Program at 1-800-TECHTAP. The Foundation for Autism Support and Training (FAST) maintains an up-to-date price list of AAC devices and SGDs. Although FAST does not sell devices, it will refer you to vendors and coops who do sell these devices.
Where can I learn more about ACC devices, see a variety of models, and try them myself?
In the Spring of 2009, The Foundation for Autism Support and Training www.myarchway.org opened the AAC Showroom and Demonstration Center in Silver Spring, Md., the first of its kind in Montgomery County. At no charge and by appointment, any person with autism in Maryland, or any family member of a person with autism may set up an appointment to try out, learn about and play with a full range of leading Speech Generating Devices in a relaxed setting. Trained staff will be available to demonstrate devices, answer questions, and provide AAC information.
Where can I receive advice and consultation on which particular SGD will best serve my child’s needs, and where can I be trained to use a device?
In Maryland, most county school systems have departments of special education, and those departments have Assistive Technology (AT) Divisions. Call your school system’s AT Division to set up an AAC consultation. In Montgomery County, Maryland, call the Interdisciplinary Augmentative Communication and Technology Team at (301) 657-4929. or the Center for Autism Support and Training at 301-260-2777. Private services are also available through Kennedy Krieger Institute at 443-923-9200. http://www.kennedykrieger.org/kki_cp.jsp?pid=1471&bl=1
To learn more about speech generating devices go to: http://www.myarchway.org/ and click on the menu choice called Augmentative Communication.
To learn more about community living options and group homes for adults with autism, click on ARCHway on the same website.
Autism Housing: What are the Options?
Here we provide a description of the types of of group homes, supportive living, supervised living, farmstead programs, community living options, family teaching model, cooperatives, shared housing and other residential models. For a state by state listing of group homes and residential service providers, go to www.myarchway.org and to talk with other parents who want to discuss this topic, go to www.myarchway.ning.com
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
Help for Autism: Creating a Good Quality of Life for Adults with Autism
To find out more about how you can improve the quality of life for adults with autism, go to www.myarchway.org
Quality of Life may be defined as the degree to which a person enjoys the important possibilities of his or her life. Quality of Life for people with autism spectrum disorder consists of the same aspects of life as for all other people. But people on the autism spectrum have their own specific needs that must be met to ensure a good quality of life, to include the quality of the environment (group homes, residential facilities and community living options) in which the person with autism lives.
Quality of Life for adults with autism always starts with dignity and respect for each person, but in addition, there are also specific needs for an adult on the autism spectrum that must be met to ensure a good quality of life.
Dr. Susan Bryson wrote about the central needs of adults with autism and the essential qualities that need to be part of any services and supports for adults with autism to ensure a quality life. She summarizes the major needs of people with autism as:
The need to communicate wants and desires and to interact meaningfully with others;
The need for highly structured, predictable and familiar surroundings;
The need for work and recreational-leisure activities to give meaning to existence and provide a sense of accomplishment and being valued by others;
The need for a safe and caring place of residence chosen from options along a continuum of residential services;
The need for adequate and sensitive health services;
The need for advocates to ensure that rights and needs are respected and not violated, and that existing services are appropriate and adequate for each individual.
Regarding quality of life issues, the declaration by The Autism and Asperger's Syndrome Independent Living Association (whose majority membership are adults with autism) states:
Measuring “quality” assures standards that exceed current professional practice and calls for periodic redefinition of "best practices." Any measurement of quality should consider "the satisfaction and preferences of the individual with autism and Asperger's Syndrome first and foremost and the satisfactions of family, friends and advocates as secondary." Supports and services for people on the autism spectrum are said to have quality when:
They are designed with maximum control by people with autism and Asperger's Syndrome;
They would be acceptable to people without disabilities;
They are delivered in settings people without disabilities would use;
They are individualized and relevant to individual needs;
They are changed as the needs of individuals change;
They are adequately funded;
They help people develop maximum independence;
They respect the dignity and privacy of individuals.
To improve the quality of life for adults on the autism spectrum, the quality of their living environment, i.e., community housing options, residential facilities, residential programs, residential schools, group homes, supported housing, and housing alternatives should be carefully considered.
A quality environment:
Provides basic needs including healthy and appealing food, shelter, safety and social contact;
Provides a caring place of residence chosen from options along a continuum of residential services;
Provides a range of opportunities within the individual’s potential;
Provides control and choice within that environment;
Provides proper autism treatment for consumers and autism-specific training of direct support staff and their supervisors to ensure a proper understanding of the issues that affect adults with autism spectrum disorder; and
Provides augmentative communication tools, technology and related services to help consumers with autism communicate wants and desires and interact meaningfully with others.
Overall findings on Quality of Life (QOL) issues were reported in Quality of Life – Dream or Reality? Life for People with Developmental Disabilities in Ontario by Ivan Brown, Dennis Raphael and Rebecca Renwick (Quality of Life Research Unit, Centre for Health Promotion, University of Toronto, 1997).
Overall QOL scores were found to be "poor" (indicating a strong need to improve QOL) for people in large institutional settings and large residential facilities and residential schools for nonverbal people everywhere. People with autism are "nonverbal" in that they either do not use speech at all, or they do not use functional speech as compared with typical people. Moreover, adults with autism have seldom been appropriately supported with augmentative and alternative means of communication. The factors involved in QOL may be expressed more positively.
People with higher QOL were associated with the following characteristics:
Living in community settings;
Having verbal skills;
Having higher functional abilities;
Not seeing a psychiatrist or taking psychotropic medications;
Not having complex medical needs;
Nonverbal people with higher QOL were associated with:
Having an occupational activity of some kind;
Not having marked behavior problems;
Having leisure activities in community;
Having community access;
Being more independent;
Making own decisions;
Having opportunities available from which decisions can be made;
Having practical support from other people;
Having emotional support from other people.
Quality of life for people with autism spectrum disorder and other developmental disabilities consists of the same aspects of life as for all other people. But adults on the autism spectrum, many of whom can not effectively communicate their needs, have specific needs that must be met to ensure a good quality of life. Many of these needs center on a range of sensory integration issues they struggle with, and those need to be recognized and appropriately addressed by caretakers.
Quality of life for people with autism and other developmental disabilities is based on common aspects of life for all humans, but it also reflects, from person to person, varying degrees of importance placed on those aspects of life. Quality of life for all people reflects how satisfied they are with aspects of life that are important to them. People live in environments. Thus, quality of life results from the interconnection between people and the environments in which they live.
To find more information on how you can help improve the quality of life for adults with autism spectrum disorder and other pervasive developmental disorders, contact the www.myarchway.org
Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4
Quality of Life may be defined as the degree to which a person enjoys the important possibilities of his or her life. Quality of Life for people with autism spectrum disorder consists of the same aspects of life as for all other people. But people on the autism spectrum have their own specific needs that must be met to ensure a good quality of life, to include the quality of the environment (group homes, residential facilities and community living options) in which the person with autism lives.
Quality of Life for adults with autism always starts with dignity and respect for each person, but in addition, there are also specific needs for an adult on the autism spectrum that must be met to ensure a good quality of life.
Dr. Susan Bryson wrote about the central needs of adults with autism and the essential qualities that need to be part of any services and supports for adults with autism to ensure a quality life. She summarizes the major needs of people with autism as:
The need to communicate wants and desires and to interact meaningfully with others;
The need for highly structured, predictable and familiar surroundings;
The need for work and recreational-leisure activities to give meaning to existence and provide a sense of accomplishment and being valued by others;
The need for a safe and caring place of residence chosen from options along a continuum of residential services;
The need for adequate and sensitive health services;
The need for advocates to ensure that rights and needs are respected and not violated, and that existing services are appropriate and adequate for each individual.
Regarding quality of life issues, the declaration by The Autism and Asperger's Syndrome Independent Living Association (whose majority membership are adults with autism) states:
Measuring “quality” assures standards that exceed current professional practice and calls for periodic redefinition of "best practices." Any measurement of quality should consider "the satisfaction and preferences of the individual with autism and Asperger's Syndrome first and foremost and the satisfactions of family, friends and advocates as secondary." Supports and services for people on the autism spectrum are said to have quality when:
They are designed with maximum control by people with autism and Asperger's Syndrome;
They would be acceptable to people without disabilities;
They are delivered in settings people without disabilities would use;
They are individualized and relevant to individual needs;
They are changed as the needs of individuals change;
They are adequately funded;
They help people develop maximum independence;
They respect the dignity and privacy of individuals.
To improve the quality of life for adults on the autism spectrum, the quality of their living environment, i.e., community housing options, residential facilities, residential programs, residential schools, group homes, supported housing, and housing alternatives should be carefully considered.
A quality environment:
Provides basic needs including healthy and appealing food, shelter, safety and social contact;
Provides a caring place of residence chosen from options along a continuum of residential services;
Provides a range of opportunities within the individual’s potential;
Provides control and choice within that environment;
Provides proper autism treatment for consumers and autism-specific training of direct support staff and their supervisors to ensure a proper understanding of the issues that affect adults with autism spectrum disorder; and
Provides augmentative communication tools, technology and related services to help consumers with autism communicate wants and desires and interact meaningfully with others.
Overall findings on Quality of Life (QOL) issues were reported in Quality of Life – Dream or Reality? Life for People with Developmental Disabilities in Ontario by Ivan Brown, Dennis Raphael and Rebecca Renwick (Quality of Life Research Unit, Centre for Health Promotion, University of Toronto, 1997).
Overall QOL scores were found to be "poor" (indicating a strong need to improve QOL) for people in large institutional settings and large residential facilities and residential schools for nonverbal people everywhere. People with autism are "nonverbal" in that they either do not use speech at all, or they do not use functional speech as compared with typical people. Moreover, adults with autism have seldom been appropriately supported with augmentative and alternative means of communication. The factors involved in QOL may be expressed more positively.
People with higher QOL were associated with the following characteristics:
Living in community settings;
Having verbal skills;
Having higher functional abilities;
Not seeing a psychiatrist or taking psychotropic medications;
Not having complex medical needs;
Nonverbal people with higher QOL were associated with:
Having an occupational activity of some kind;
Not having marked behavior problems;
Having leisure activities in community;
Having community access;
Being more independent;
Making own decisions;
Having opportunities available from which decisions can be made;
Having practical support from other people;
Having emotional support from other people.
Quality of life for people with autism spectrum disorder and other developmental disabilities consists of the same aspects of life as for all other people. But adults on the autism spectrum, many of whom can not effectively communicate their needs, have specific needs that must be met to ensure a good quality of life. Many of these needs center on a range of sensory integration issues they struggle with, and those need to be recognized and appropriately addressed by caretakers.
Quality of life for people with autism and other developmental disabilities is based on common aspects of life for all humans, but it also reflects, from person to person, varying degrees of importance placed on those aspects of life. Quality of life for all people reflects how satisfied they are with aspects of life that are important to them. People live in environments. Thus, quality of life results from the interconnection between people and the environments in which they live.
To find more information on how you can help improve the quality of life for adults with autism spectrum disorder and other pervasive developmental disorders, contact the www.myarchway.org
Also see our public service announcement on You Tube with Annie Potts called “A Perfect Storm” on developing community housing options for adults with autism http://www.youtube.com/watch?v=Jtdo6Zh4ok4
Autism Housing: What are the Options?
Here we provide a description of the types of of group homes, supportive living, supervised living, farmstead programs, community living options, family teaching model, cooperatives, shared housing and other residential models. For a state by state listing of group homes and residential service providers, go to www.myarchway.org and to talk with other parents who want to discuss this topic, go to www.myarchway.ning.com
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
Supported Living: Provides residential services to adults with developmental disabilities who are able to live in self-owned or leased homes in the community. Programming and instruction are directed by the consumer, not the program. Much emphasis in on community integration. Staff may help with some assistance in daily living. Supported living models may be more suited for individual with an established repertoire of life skills and those who do not engage in significant levels of challenging behavior.
Supervised Living: A residential model designed to provide services with greater oversight and direction than might be provided in a supported living context, but less than a group home. Homes may be self-owned or leased, usually with one or two adults with ASD per residence, there may be a number of such residences scattered though out the building or housing complex, allowing for greater staff accessibility oversight. Crisis support is available 24 hours/day. Daily schedules are generally provided, with input from the individual consumer, and staff is available to provide direct instruction or support.
Group Homes: Provides residential services in more typical homes in the community setting. Ownership of the house usually lies with the provider agency, as do staffing decisions. Most have fewer than 6-8 consumers living in one residence and in most states, there is a recent trend where developmental disabilities service systems will not provide funding support for group homes who house more than, three-four consumers. A primary goal of group home living is to promote increasingly greater levels of independence in the residents. Instruction is provided in daily living and self help skills including meal preparation, laundry, housecleaning, home maintenance, money management, hygiene, and showering, dressing and appropriate social interactions are provided by agency staff. Staff may be trained in behavior management interventions.
Farmstead Program: A residential model set within the context of a working farm. While isolated by nature farmstead programs endeavor to meet the complex needs of adults with ASD and other developmental disabilities through the development of individually designed instructional programs focused on farm living. Vocational training is generally limited to farm-related work (e.g., horticulture, greenhouse management, woodworking, animal care, landscaping, etc.) although other opportunities may be available in nearby communities. Residents work along with staff at tasks relevant to the care and maintenance of the grounds and the farm. There is often little in the way of community integration or community based-instruction and life skill instruction is generally provided relevant only to those skills associated with life within the farmstead community. Bittersweet Farms, in Whitehouse, Ohio was the first Farmstead Program for people with ASD established in the United States and remains the most widely recognized model for this, very specific, category of residential services.
Teaching Family Model: A specialized model of group home service provision where usually a married couple lives in the house in separate quarters rent-free and provides supervision to other members of the treatment team and direct service to residents.
Shared Equity Models – Co-ops and Co-housing
There are variety of shared equity strategies such as cooperatives, to help many families take their first steps to home ownership. A cooperative (co-op) is an autonomous association of persons united voluntarily to meet their common economic, social and cultural needs and aspirations. Cooperatives are member-owned and democratically controlled enterprises. Members may unite in a cooperative for many reasons--to get services otherwise not available, to get quality supplies at the right time, to have access to markets or for other mutually beneficial reasons.
These paths can lead to home ownership opportunities for those otherwise unable to afford to buy. In exchange for this opportunity, the new homeowner agrees that when they sell in the future, they will receive only a portion of the equity appreciation. This will keep the property affordable and enable future buyers the opportunity for home ownership. Over the last few years, strategies including community land trusts and affordability restrictions related to inclusionary housing, along with cooperative housing, have substantially increased the availability of shared equity options for both developers and government policy makers to enable low- and moderate-income families to become homeowners.
The National Capital Bank: Capital Impact group has an excellent manual called Home Base: The Playbook for Cooperative Development which lays out a full understanding of the basics of cooperatives, and provides a step by step process for developing co-ops. NCP Capital Impact integrates their efforts with Community Development Corporations and Community Based Organizations, government agencies, investors and foundations. Their mission is pulling together private and public resources to fully leverage resources for the communities we serve. They have worked extensively with the Department of Developmental Disabilities in Maryland, but provide assistance on a national level.
These are some models that they offer expert technical assistance in:
Co-Housing
The underlying components of cohousing include optimal community engagement, communal design features, resident management, common facilities, private multifamily units, lessened impact on infrastructure and lower energy costs. Cohousing units are generally more affordable than conventional housing units due to the multifamily nature of units, but also because a core component to cohousing is to control costs. Cohousing units tend to be studio, 1-bedroom and 2-bedroom units. Buildings are clustered, and therefore use less land. Shared utilities or facilities, like shared water or gas mains and laundry facilities, utilize less energy.
As cohousing is resident-led, volunteer groups may be established to provide aid to seniors while certain services may be conducted by contracted service providers. Cohousing designed for people with disabilities and seniors may pay more attention to ease of access for all levels of physical ability and incorporate universal design elements. Cohousing communities may include optional studio residences in or near the common house to provide living quarters for service provides/home health aides, allowing for partial or full 24-hour services provision.
Limited Equity/Shared Equity Housing Cooperative
You may also want to consider a limited or shared equity housing cooperative for the project. This would provide an opportunity for people with autism and the moderate/low income direct care workers to come together to cooperatively own a multi-family building. By forming a cooperative there is a shared ownership structure that can provide limited equity to perpetuate affordable housing and community living options for a variety of populations. You may want to look at consumer controlled housing models found in Minnesota - http://rtc.umn.edu/guide/
Community Land Trusts (CLTs)
CLTs are membership-based non-profit organizations that own the land under the housing in order to preserve affordability of these homes for future residents. I am not certain if CLTs can be owned/operated by a government entity but I don't see why the state couldn't be a member of the organization to preserve the use of the land for affordable community living. This model provides a long term lease or in some cases covenants on the title of the housing property to ensure the CLT is consulted and involved every time a home is sold. This model could be used in conjunction with both the Cooperative and Co-housing models but you would want to get a consultant to advise you of the best structure to maximize ownership and control by the residents.
Please also see a new paper on housing options for adults with autism on the SAARC website.
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