A written life plan helps ensure your adult child’s needs are thoroughly understood by future caregivers.
Since none of us can be sure what the future holds, it is critically important for a parent of an adult on the autism spectrum to develop a written life plan for their loved one well before their adult child may need to leave the family home. A life plan helps parents answer the question, “What will happen to my child when I am gone or unable to care for him or her?” A life plan spells out in detail the personal needs and preferences of the individual with autism. It also lays out a parent’s intentions for future care of their adult-child throughout the life-span and clarifies financial and legal arrangements made on behalf of the person with autism. Life planning is a key component of the family training and autism education services offered through the Foundation for Autism Support and Training (FAST).
Why You Need to Develop a Life Plan for a Person with Autism
A parent of an adult with autism may wrongly assume that their other children or a sibling will take care of their adult child with autism, once they are gone. This arrangement is frequently unworkable.Many parents of adults with autism are so busy dealing with the day- to- day care of their loved ones, or are under so much stress dealing with the extreme demands of parenting, that they have not planned for their children’s futures. Some parents are not aware that life plans are needed and valuable, while others are confused about how to write a life plan or where to seek help.Many parents of adult children with autism believe they will continue to be the primary caretaker for the remainder of their loved one’s life. Such unrealistic and magical thinking does not consider the following possibilities:
· The fact that most adults on the autism spectrum outlive the parents;
· The adult with autism may develop behavior patterns that may create a serious, unanticipated crisis situation that would make it unsafe for the loved one to continue living at home;
· The parent may wrongly assume that other children will take care of their disabled sibling, not realizing that in reality, this plan would be unworkable or unrealistic;
· The extremely undesirable circumstance where the consumer with autism might become the caregiver to his own parent;
· The parent may erroneously assume that the government will take care of his loved one sufficiently or find quality group homes or quality residential facilities.
· Avoiding or delaying the process of life planning could eventually cause a loved one with autism to go through some very rough times in the future or end up in large residential facilities where the individual’s quality of life is greatly reduced.
· Some current financial benefits may be interrupted, which would affect the consumer’s quality of life. · New caregivers in group homes and residential facilities may have difficulty understanding the consumer’s actions, desires, preferences, communication patterns, etc., without written guidance.
· Without written details of a parent’s wishes and desires, future caregivers may unknowingly go against the parent’s wishes for their loved ones.
· Imagine how confused and upset the consumer would feel not knowing where his next meal is coming from or where he will sleep that night! If life planning is accomplished before a crisis erupts, parents can gradually plan for their adult child’s future, and managers and staff of small residential facilities, group homes, or supported housing options in the community can get to know the consumer’s need and behaviors, which will determine what type of residential setting and residential care will best address his or her emotional and therapeutic needs.
Life Planning Services can and should be a centerpiece of ancillary family training and autism education services offered by supported and alternative community housing providers and day program services providers and vendors. Recommendations and resources should also be provided to help families find experts in special needs law and financial planning.
If people reading this wish to contact you or ARCHway how can they do that?
People with autism, service providers or parents of individuals with autism who are wishing to undertake lifespan planning and planning for housing needs of their transitioning teens or adults with autism may contact ARCHway at www.myarchway.ning.com and join our social networking site to stay in close contact with us.
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
Showing posts with label autism housing. Show all posts
Showing posts with label autism housing. Show all posts
Thursday, March 18, 2010
Augmentative Communication news stories with Karen Kaye-Beall and Tyler
Augmentative Communication news stories with Karen Kaye-Beall and Tyler
If you would like to see some short news shows that feature Karen Kaye-Beall working with her son Tyler Beall on an augmentative communication device and also see a range of AAC devices in the Foundation for Autism Support and Training - Augmentative Communication Showroom and Demonstration Center, go to www.myarchway.ning.com and become a member (free of charge). Scroll down the far left hand margin and you will find the links to a variety of news reports.
There is also a very good introductory video on You Tube on this subject:
http://www.youtube.com/watch?v=Eb_URYj_L_k
Although this You Tube video primarily features Dynavox products, by no means is Dynavox the only manufacturer.
Here is a list of only a few of the hundreds of other manufacturers. This list represents the devices we have in our AAC showroom and does not necessarily constitute an endoresment. Some manufacturers were kind enough to donate a sample device to our non profit showroom, some provided signficant discounts, others did not cooperate, so we had to purchase a few devices to have a comprehensive sample of devices.
These prices were 2009 prices so do your research with each company to get up to date pricing.
My son Tyler is using a green Vantage Lite (by Prentke Romich) with Picture Word Power added onto it. You will find that info below as well. We really like this device and software for Tyler, but keep in mind, a qualified speech and language pathologist must do a proper assessment to determine which device will best serve your chld or adult with autism. Check with your school system's special education department to see if they have an Assistive Technology Department. If so, try to arrange an AAC assessment free of charge for your child.
If you can not get that service where you live, call any of the vendors below, especially Dynavox or Prentke Romich to speak with their Speech and Language Pathologist to see if they can provide you with the name of a qualifed expert you could hire privately in your area for an AAC assessment. Other vendors below may also be able to provide that advice and referral information.
Little Mack, Ablenet Inc. $109. 800-322-0956
Step by Step, Ablenet Inc $140-179. 800-322-0956
Talk Pad, Frame Technologies $99. 920-869-2979
Lingo, Ablenet Inc $179. 800-322-0956
Voice Pal 8K, Adaptivation, Inc. $219. 800-723-2783
SuperTalker, Ablenet Inc $375. 800-322-0956
Go Talk 9, Attainment Corp. $199. 800-327-4269
Go Talk 20, Attainment Corp $249. 800-327-4269
Chat PC, Saltillo $2020-$2800 330-674-6722
Auggie, RJ Cooper, $2000 800-752-6673
Mini Auggie, RJ Cooper $1149 (case $49) 800-752-6673
Vantage Light, PRC, $7000-$8000. 800 -262-1933
Dynavox V, DynaVox/Mayer-Johnson 866 - 396-2869$7500-$8500
Speaking Dynamically Pro, Mayer-Johnson Co. $519 + Picture WordPower add on +$350. 800-588-4548
For further information on augmentative communication devices and how they can help individuals with autism, go to: www.myarchway.org and click on the menu choice called Augmentative Communication.
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 on autism housing 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
If you would like to see some short news shows that feature Karen Kaye-Beall working with her son Tyler Beall on an augmentative communication device and also see a range of AAC devices in the Foundation for Autism Support and Training - Augmentative Communication Showroom and Demonstration Center, go to www.myarchway.ning.com and become a member (free of charge). Scroll down the far left hand margin and you will find the links to a variety of news reports.
There is also a very good introductory video on You Tube on this subject:
http://www.youtube.com/watch?v=Eb_URYj_L_k
Although this You Tube video primarily features Dynavox products, by no means is Dynavox the only manufacturer.
Here is a list of only a few of the hundreds of other manufacturers. This list represents the devices we have in our AAC showroom and does not necessarily constitute an endoresment. Some manufacturers were kind enough to donate a sample device to our non profit showroom, some provided signficant discounts, others did not cooperate, so we had to purchase a few devices to have a comprehensive sample of devices.
These prices were 2009 prices so do your research with each company to get up to date pricing.
My son Tyler is using a green Vantage Lite (by Prentke Romich) with Picture Word Power added onto it. You will find that info below as well. We really like this device and software for Tyler, but keep in mind, a qualified speech and language pathologist must do a proper assessment to determine which device will best serve your chld or adult with autism. Check with your school system's special education department to see if they have an Assistive Technology Department. If so, try to arrange an AAC assessment free of charge for your child.
If you can not get that service where you live, call any of the vendors below, especially Dynavox or Prentke Romich to speak with their Speech and Language Pathologist to see if they can provide you with the name of a qualifed expert you could hire privately in your area for an AAC assessment. Other vendors below may also be able to provide that advice and referral information.
Little Mack, Ablenet Inc. $109. 800-322-0956
Step by Step, Ablenet Inc $140-179. 800-322-0956
Talk Pad, Frame Technologies $99. 920-869-2979
Lingo, Ablenet Inc $179. 800-322-0956
Voice Pal 8K, Adaptivation, Inc. $219. 800-723-2783
SuperTalker, Ablenet Inc $375. 800-322-0956
Go Talk 9, Attainment Corp. $199. 800-327-4269
Go Talk 20, Attainment Corp $249. 800-327-4269
Chat PC, Saltillo $2020-$2800 330-674-6722
Auggie, RJ Cooper, $2000 800-752-6673
Mini Auggie, RJ Cooper $1149 (case $49) 800-752-6673
Vantage Light, PRC, $7000-$8000. 800 -262-1933
Dynavox V, DynaVox/Mayer-Johnson 866 - 396-2869$7500-$8500
Speaking Dynamically Pro, Mayer-Johnson Co. $519 + Picture WordPower add on +$350. 800-588-4548
For further information on augmentative communication devices and how they can help individuals with autism, go to: www.myarchway.org and click on the menu choice called Augmentative Communication.
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 on autism housing 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
What goes in a Life Plan for Adults with Autism Spectrum Disorder?
What goes in a Life Plan for Adults with Autism Spectrum Disorder?
A life plan for an adult on the autism spectrum is a critical document developed on an ongoing basis that details a comprehensive plan for your loved one’s life.
A Life Plan should include a parent’s specific wishes and desires for their adult child’s future living arrangements throughout the lifespan.
The information in a Life Plan is then used by people who subsequently care for the adult with autism when the parent is no longer the primary caretaker.
The plan should be reviewed annually as the consumer ages and the family situation changes, and at least every three years to ensure that legal documents are still up to date;
The plan containes legal planning documents such as wills, special needs trusts, arrangements for guardianship and guidelines for establishing or maintaining state and federal benefits;
Financial planning in conjunction with legal planning that will safeguard SSI and Medicaid benefits, and inheritance;
Financial planning to ensure that the “extras” in life that families provide--cable TV, vacations, favorite books and CDs, favorite clothing styles--are continued;
Predictions of probable medical needs and desired interventions;
Residential needs and desired living environments such as alternative housing options, residential facilities, group homes, and supported living options in the community;
Details on the consumer’s likes, dislikes, preferences and unique personality features;
Instructions for final arrangements and burial plans;
Detailed choices a consumer may wish to make beyond basic food, housing and medical needs;
Specifics on how the consumer may have control over his/her life choices;
Assurances are detailed that someone the family knows and trusts will be watching over and advocating for their loved one;
The life plan may also provide a schedule or example of a typical day in the life of the consumer.
For further information of Lifespan Planning for people with ASD go to www.myarchway.org and go to the Lifeplanning menu choice.
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
A life plan for an adult on the autism spectrum is a critical document developed on an ongoing basis that details a comprehensive plan for your loved one’s life.
A Life Plan should include a parent’s specific wishes and desires for their adult child’s future living arrangements throughout the lifespan.
The information in a Life Plan is then used by people who subsequently care for the adult with autism when the parent is no longer the primary caretaker.
The plan should be reviewed annually as the consumer ages and the family situation changes, and at least every three years to ensure that legal documents are still up to date;
The plan containes legal planning documents such as wills, special needs trusts, arrangements for guardianship and guidelines for establishing or maintaining state and federal benefits;
Financial planning in conjunction with legal planning that will safeguard SSI and Medicaid benefits, and inheritance;
Financial planning to ensure that the “extras” in life that families provide--cable TV, vacations, favorite books and CDs, favorite clothing styles--are continued;
Predictions of probable medical needs and desired interventions;
Residential needs and desired living environments such as alternative housing options, residential facilities, group homes, and supported living options in the community;
Details on the consumer’s likes, dislikes, preferences and unique personality features;
Instructions for final arrangements and burial plans;
Detailed choices a consumer may wish to make beyond basic food, housing and medical needs;
Specifics on how the consumer may have control over his/her life choices;
Assurances are detailed that someone the family knows and trusts will be watching over and advocating for their loved one;
The life plan may also provide a schedule or example of a typical day in the life of the consumer.
For further information of Lifespan Planning for people with ASD go to www.myarchway.org and go to the Lifeplanning menu choice.
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
Developing Person-Centered Community Housing Options for Adults with Autism
Autism Reoriented Community Housing (ARCHway) is an community housing initiative by the Foundation for Autism Support and Training, a national non-profit offering advice and consultation on person-centered housing solutions for adults with autism. Members of ARCHways Consortium have 20-30 years experience and include pioneers of person-centered housing and assistive technology for people with autism and other related disabilities. ARCHway’s Executive Director, Karen Kaye-Beall offers Q&A.1. What is meant by the term a “person-centered” approach to developing housing for people with autism?As most people know, autism is a spectrum disorder. People with autism can be low, mid or even high functioning persons. In person centered planning, it is critically important to have a very thorough understanding of the many signs and symptoms each individual with autism experiences. The main signs and symptoms of autism involve problems (to greater or lesser degrees of severity) in the following areas:--Communication - both verbal (spoken) and non-verbal (unspoken, such as pointing, eye contact, and smiling)--Social - such as sharing emotions, understanding how others think and feel, and holding a conversation. They have difficulty reading facial expressions or picking up social cues.--Stereotyped behaviors - Routines or repetitive behaviors such as repeating words or actions, obsessively following routines or schedules, and playing in repetitive ways. Also unable to play or keep themselves occupied in a normal or typical fashion. Many experience sensory integrative dysfunction.--Sensory Integrative Dysfunctions -Many people with autism also experience “sensory integrative dysfunction” which means that their sensory channels can be abnormal. They may become ultra sensitive to certain sounds, certain sights, certain textures, and certain physical sensations. So for some, it becomes important to control the environment so that these overwhelming sensory overload experiences are kept to a minimum.Each and every individual with autism certainly does not experience each and every symptom, or with the same severity. Different people with autism can have very different presenting symptoms. Within each of the key diagnostic categories, i.e., communication, social, behavioral and sensory, one person may have mild symptoms while another may have serious symptoms that may cause them to need close support so they do not become a danger to themselves or others.. But they both have an autism spectrum disorder.A person-centered approach takes into consideration the differing support and environmental needs of each and every individual, to ensure that each person is kept safe, yet is allowed the maximum independence they are capable of handling while provided with experiences, activities and opportunities to continue to learn and grow and thrive.2. When designing community living models and options for people with autism, it is important to consider whether the individual has support needs that are consistent with someone who is higher functioning, middle of the spectrum or lower functioning?One size never fits all, but it is possible to create subcategories of support needs. For those that sound insulation is an important element, for example, housing with sound insulation will best meet the needs of these individuals in this subset. There are many such examples.--On the higher end of the autism spectrum (many having a diagnosis of Asperger’s Syndrome, but not all), some having received ongoing support and training as a child and therefore, learned to function relatively independently in terms of activities of daily living and spend their time somewhat productively as an adult, but likely with restrictive interests or obsessive interests. Some or all of their symptoms may be considered mild. They may have varying degrees of communication and social skills, and demonstrate some self-stimulatory behaviors, but may still lack safety awareness and may show some obsessive compulsive behaviors. Consumers need their supports (to lesser degrees), to see and monitor their activities. They still may require some lists and visual prompts for daily living. These individual may certainly be able to live in apartments or townhouses with appropriate staff support living with them, depending on their individual needs. It may be fine to indentify housing as part of the already established housing fabric in our society. However, in some instances, adaptations may need to be added such as better sound insulation, alarm systems or the inclusion of certain assistive technology such as sensors and various non invasive monitoring devices.--On the middle of the autism spectrum, usually meaning that they have some degree of severe communication problems, social problems, some self-stimulatory behavior, and “occasionally” demonstrates an aggressive action or “occasionally” does some action that may harm them. Many will show some obsessive-compulsive traits. They also may need some help in activities of daily living, but also self sufficient to some degree. Most lack safety awareness. These individuals may test the strength of materials in their physical environment. Consumers need their supports to see and monitor their activities to assure safety. They will likely still need prompts and visual supports for daily living. These individuals may likely need 24 hour care, but can handle a number of activities of daily living if reminded. People that test the strength of their environment need a number of adaptations in the environment, many of which may not be easily found in the readily available housing fabric. Adaptations may include the need for safety glass in windows; doors that do not slam; cabinets and walls made of materials that do not fall apart easily for harder daily wear and tear--On the low end of the spectrum: It is fair to say that those with ASD that frequently (rather than only occasionally) display severe problem behaviors including aggression, self injurious or disruptive behavior are referred to as being on the low end of the autism spectrum, regardless of their ability to communicate, socialize or function reasonably independently. Some of these individuals may have been in facilities for many years, with little or nothing to do and some may have taken any number of combinations of prescribed drugs that rather than control these behaviors, may have increased some unacceptable and maladaptive behaviors. When considering the stereotype of someone with autism who never acknowledges those around them, sits constantly rocking in a chair all day, and is a person needing help with many or most of his hygiene needs, it is likely fair characterize that person as being on the low end of the spectrum. This individual lacks safety awareness. These individuals will test the strength of materials in their physical environment. These consumers need their supports to see and monitor their activities to assure safety. They will likely still need frequent verbal and visual prompts for daily living and likely much hand over hand prompting to accomplish most tasks.3. Are you saying that people with autism can not live in typical housing?No, I am not saying that. It is always preferable when people with autism can live in typical housing already available, but when taking a person-centered approach, it is mandatory that the physical environment matches the behavioral and support needs of each individual that lives there, or else, you may find a house that has constant holes in the walls, broken windows, broken curtain rods or such thin walls, that each individual who may be sensitive to sound may have behavioral melt downs unless some appropriate sound insulation is put into place. In some instances, these adaptations can be done as a simple renovation to preexisting housing. In other situations that are much more complex, it can be much more cost effective to just build new from scratch and not try to renovate a pre-existing environment.4. In your experience, do group homes address these adaptations to the physical environment and use person centered approaches?While using a person centered approach has become an ideal for many providers of residential services in the autism field, in most instances, it is not fully put into practice. An opening or available bed will become available in a group home, and that opening will be offered to an individual in need. If the new person with autism needs a higher staffing ratio, that modification may or may not be put in place, but rarely are modifications done to the actual physical environment to accommodate the needs of the new individual. It is usually after the fact that holes in the walls are repaired, or new doors placed back on their hinges and so forth that environmental modifications are done, and in many cases, not even then.5. What alternatives do parents of adults with autism have besides accepting the next bed that opens up in a group home?A parent can always try to work with a provider or vendor to ask them to make environmental adaptations to suit their loved one’s needs. If that fails, a parent has the option to develop their own housing for their loved one with autism and that might include a roommate situation, or it might be jointly owned by the group or the trusts of the group as “cooperative housing”. In this case, a small group would form together to create housing, and would seek the guidance and consultation of a group like ARCHway, whose consortium members and consultants have countless years of experience developing housing and adapting housing to meet the needs of people with autism on all parts of the spectrum. They are also experienced in recruiting, training and supervising support staff and can provide the group ongoing consultation until they are able to develop the staffing structure and the housing they need. They can also serve as intermediaries between a parent group and a residential provider or vendor who may wish to provide services to that particular co-op group.6. How much does specialized housing cost?Costs vary tremendously, depending on the costs of real estate around the country and depending on the square footage needed in each situation. Some individuals with autism may not be able to live with others, so may do best in a duplex model with caretakers living next door. Or some families may like to create a studio apartment off the back of their home so their loved one and a caretaker can live their. There may be instances where three people may want to share a home, but establish individual suites with separate full bathrooms and sitting rooms in each suite. While that model may prove advantageous for many reasons, it may require much more square footage and thus be more expensive.The best way to determine costs is by taking a person-centered approach and determining the needs of that individual or that group of individuals to determine the housing features that work best. Then pricing can be determined.7. Can you please provide us with more examples of what you mean by housing modifications and adaptations?Of the many elements that are considered in Universal Design, the main theories demand attention to acoustics, finishes, colors, textures, way-finding, scale, floor transitions, ramps/general accessibility standards, security, and glare.Keeping in consideration that all these features I will mention will not be appropriate for each individual, here are some examples:-layers of security so if someone tends to elope, there are a number of mazelike exits that staff can catch up to the person, before they could escape to the street unattended.-solid wood doors that don’t slam to help with sound insulation-insulation around air vent systems to insulate for sound-safety glass in windows-break away shades that won’t be damaged when pulled-Hardened walls and surfaces that won’t make holes when punched. Hinges that won’t easily break.-layout of housing that allows for pacing or walking in a circular motion without restriction-Proper safety storage systems-Lighting systems that allow control of the lighting in the environment, including electronic shades.-offices for staff that provides a second exit for situations of aggressive behavior-reducing the amount of sharp edges and corners in the home.-Extra wall insulation or insulation around systems in the house that might have motors.-Special attention also needs be paid to interior materials—low VOC/urea-formaldehyde paints, glues, and other materials will be used instead of the typical off-gassing materials used in typical home.-Durable fabrics on furniture-Soothing color choices on walls-bathroom floor drains to prevent flooding-Regulated temperatures in taps to prevent scolding-Room layouts and storage to promote greater independence in life skills,-Assistive technology(telecare technology) that might include computer set ups to let an individual say goodnight to parents remotely such as SKYPE; sensors where remote monitoring by staff provides information if loved ones are in bed, wandering the home, opening the refrigerator, taking a shower and more.-Many people with ASD are extremely sensitive to thermal changes, textures, lighting intensity, strong smells, visual transitions, visual noise, glare, and any other distractions that affect the senses. Using sustainable strategies will also allow building inhabitants to feel a psychological and physical connection to the outside environment. These strategies include visual connections to the outdoors (daylight and views), increase air ventilation, and controllability of systems, which leads to better indoor air quality, increased human comfort, and an overall reduction in toxins.
8. If people reading this wish to contact you or ARCHway how can they do that?People with autism, service providers or parents of individuals with autism who are wishing to plan for the housing needs of their transitioning teens or adults with autism may contact ARCHway at http://www.myarchway.ning.com/ and join our social networking site to stay in close contact with us. 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
http://www.myarchway.org/
8. If people reading this wish to contact you or ARCHway how can they do that?People with autism, service providers or parents of individuals with autism who are wishing to plan for the housing needs of their transitioning teens or adults with autism may contact ARCHway at http://www.myarchway.ning.com/ and join our social networking site to stay in close contact with us. 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
http://www.myarchway.org/
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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