Thursday, December 13, 2012
Tiny Houses for Adults with Autism
Housing for Developmentally Disabled Adults — Think Tiny
http://www.houselogic.com/blog/
See Lisa Kaplan-Gordon Interview Karen Kaye-Beall, Executive Director of the Foundation for Autism Support and Training for the NATIONAL ASSOCIATION OF REALTORS® HOUSE LOGIC online magazine article on tiny houses for adults with autism and similar developmental disabilities.
Find more info at www.foundationforautismsupportandtraining.org
Friday, March 19, 2010
Autism Housing Adaptations: Severe Autism
For more information on housing solutions for individuals with autism, go to www.myarchway.org Also, join ARCHway at www.myarchway.ning.com
George Braddock is the founder of Creative Housing Solutions www.gbcchs.com a leading housing consultant and general contractor with a 25 year proven track record in pioneering the implementation of person-centered planning principles to more than 1,500 projects and homes for people with autism and other disabilities. He is also an ARCHway Consortium member.
This blog article is a first of many articles ARCHway will be posting that George Braddock has written in order to show you the many examples of housing adaptations and modifications for improving the quality of homes for people with autism.
ANNA’S STORY: Severe Autism
Topics Covered:
• Windows
• Backyards
• Water play/Indoors and Outside
• Fencing
• Pica: Eating Hedge Plants
• Lights
• Bathroom
• Kitchen
• Entertainment Center
• Flooring
• Privacy vs. Monitoring
• Scald Prevention
Vigilance and Duct Tape Aren’t Enough Anymore
In 1997 Anna’s parents wrote to us in desperation. Anna was “getting bigger, stronger and quicker, doing things she couldn’t do before”. She was breaking the windows. “Anna has an intense interest in moving water and her powerful need for constant access to water to calm herself is creating serious health and safety issues. She turns on faucets full blast and plays in the water damaging the building and stressing her family.”
It is important to access the whole-person in the context of their environment before you design.
What the professionals told us:
• Anna experiences Autism at a severe level further complicated by enormous sensory processing problems making Anna one of the most challenging children they have encountered.
• Anna is constantly bombarded by sights, sounds, sensations and information that her brain cannot process. The filters and sorters in her brain just don’t work properly.
• Ordinary activities such as eating, sleeping and sitting down are a constant struggle for Anna.
We learned from Anna:
• She needs a home where she can do the things she likes to do without negative consequences.
• She needs a home that makes sense to her and where she is safe.
• Her home must be durable and withstand her “testing the strength of its materials”.
• She wants/needs a home where she can be in control and make choices.
• She needs a home where there are interesting things to do outside and inside that support her love of water and movement.
• Change and surprises are very difficult for Anna/
Anna’s Family Needs a Home:
• Where we can really enjoy Anna without constant intervention and re-direction.
• That will enable our family to remain together in our family home.
• That will keep everyone safe.
• That will allow Anna to safely use the bathroom the way she wants without harm or damage.
• That will provide Anna choices in preferred activities inside and outside the home.
• That is easily modified and adaptable to our family’s changing interests, abilities, needs and lifestyle.
PROJECT GOAL: A safe and sound family home where supports can be always aware of Anna’s activities and whereabouts to help her stay safe. The home needs to be a place where she can do the things she enjoys and learn new skills without hurting herself or others or damaging the building.
Disability is a consequence of the wrong environment.
Windows
Our work began with the most pressing health and safety concerns. Anna was banging on the large single-glazed picture window in the living room and kicking the window next to her bed. Anna had already broken other windows. The family had put up plexi-glass but it made their home “feel like a battle zone”.
New 3/8 inch tempered glass
Lexan installed over the existing window
Plexi-glass, Lexan or other poly-carbonate materials will protect glass from breakage. However, it scratches easily and discolors over time. More importantly, it makes the home “feel like a war zone”.
The sliding glass door and other targeted windows in the house were replaced with tempered glass.
Tempered glass is extremely strong. If it is broken it disintegrates into hundreds of small harmless pieces. Typically ¼ inch glass is placed on the inside and 1/8 inch glass laminated to the outside; this will withstand most heavy abuse. If a person uses tools or has significant head banging or kicking behaviors, 3/8 inch glass can be installed which will withstand extreme testing.
A window was added in the dining room to provide a view to the back yard. It is critical that Anna’s whereabouts and activities are known so that she can remain safe.
It is important to support the needs of the individual and their caregivers.
Backyard
Anna loves to be active in her backyard. She particularly loves running water and the stimulation of swinging. At first a standard backyard swing was adequate. But over time she out-grew it but not her love for the vestibular stimulation it provides. A new appropriate swing was required.
Anna’s fascination with running water was damaging the backyard and undermining the foundation of the house. The watering “square” and a drainage system were installed to collect and route water away from the house. Anna could do the things she loved to do without harming anyone or damaging the house.
The needs and lifestyle of a person with disabilities changes over time.
Fencing
A large Arborvitae provides protection and privacy in the backyard. Unfortunately it is poisonous and can cause seizures if ingested. By installing a coloured wire fence inside the hedge line the privacy afforded by the hedge was preserved.
Anna is all wrapped up in the fabric the family had installed to keep her from eating the hedge.
Safeguarding the reputation of a person with disability is paramount.
Lights
Standard glass ceiling globes were easily broken by balls and other flying objects. These were replaced with wire protected lenses or recessed cans.
Health and safety is improved for everyone in this simple, cost effective modification.
The Bathroom
“Anna’s water play, incontinence and perpetual motion is destroying our bathroom and creating constant stress.”
• Because Anna likes to take 5-10 baths each day, the bathroom floor is always wet and slippery. We use 25-30 towels to mop up excessive water each day.
• Anna pounds on the window and the mirror.
• “Anna is bigger, stronger and quicker. She turns the faucet on full-blast. She gets upset when we run out of hot water.
• “We are afraid Anna will get scalded. We are afraid to leave her alone in the bathroom.”
• Standing water is unsanitary and a slip-hazard.
• “Anna jumps vigorously in and out of the tub.”
• “We have no place to store wet items or bath toys. The existing two-sink vanity is impractical.”
Anna spends many hours each day in the bathroom in intense water play, a source of tremendous stress on her family and damaging to the physical structure of the house. Based on an evaluation of the space, Anna’s desires and her family’s needs, a remodel plan was developed to improve the layout and technical performance of the bathroom. Grab bars, impervious materials, heated surfaces, improved lighting, durable fixtures and other elements were introduced.
New Vanity and Tub/ Shower
Radiant heat mat under the tile keeps the floor warm and helps it to dry faster.
Floor drain eliminates need for 25-30 towels to mop up excessive water after every bath
•Old toilet area is now a place to store wet items
•Tempered glass mirror
Basket provides place to store wet toys. Window with 3/8” tempered glass
Anna will not use the existing toilet.
The space is cramped making it difficult to assist.
There needs to be additional room around the toilet.
It needs to support a toileting ritual that makes sense for her.
The space needs to be inviting and comfortable for Anna.
The new toilet location provides adequate room to assist.
It is bright and inviting.
The area is warmed by the floor heat.
Tile surfaces are easily cleaned and sanitized.
Shelves support use of picture schedules.
The evaluation of the completed project and its effect on Anna’s life shows that she can now do what she clearly enjoys without negative consequences. Safety is improved, damage to the building is minimized and her family experiences significantly less stress and more freedom because they spend less time doing intensive supervision and clean-up. Anna has exhibited a reduction in behavioral episodes because she experiences more choice, control and independence in her life.
The Kitchen
The kitchen in Anna’s home has always been the center of activity. When she was little she had to have the water running near-by in order to eat her food. When she was not in the bathroom or outside playing with water, she was at the kitchen sink.
“Anna’s water activities at the sink have caused significant damage to wood, walls, sheetrock, countertops and cabinets.” Dry rot has and will continue to occur.
Plastic installed to protect walls and countertops detracted from the feeling of home.
New post-form laminate countertop and cast iron sink with heavy duty faucet supported Anna’s use of the kitchen without damage.
over time Anna has developed a love of cooking, she is an expert at pouring and measuring liquids “she never spills a drop”.
A supportive physical environment promotes individual independence and empowerment.
Entertainment Center
Anna needs a water proof entertainment center because she will fill her mouth with water and will spit on the TV when she is upset. There were six water-logged televisions in the garage.
Anna’s bedroom is her ‘safe place’. The TV and VCR are her favorite ‘comforting things’. Her large photo albums, favorite tapes, story books and beads need to be in her bedroom.
The entertainment center has a water-proof, lockable area for the TV. Vent holes were drilled to prevent over-heating; speakers were installed in the ceiling, to keep the sound from disturbing her brother next door. The unit was inset in the wall to save floor space and ensure a solid connection to the framing. Space was provided for her favorite things closer to the floor.
Over time Anna gained more experience and developed the capacity to use her TV without assistance. With more control came more opportunities. She no longer needs a locked cabinet in her room and freely uses the entertainment center in the family room.
Flooring
Although carpeting is ‘home like’, even the best of it is difficult to keep clean or sanitize. Anna “has toileting accidents, food spills and then there is always the water”. The biggest issue is in the bedroom, her sleeping and leisure space. We need to be able to clean and deodorize this environment easily.
The carpet was replaced with a commercial grade vinyl. The material was coved up the walls to protect the edges from water. Throw rugs that can be simply picked up and laundered as needed help to soften the look of the vinyl floor coverings.
Privacy Versus Peace of Mind
When Anna was in her safe place, her family needed to know if she was okay or needed their help to stay safe. When they opened the door to check on her, the interruption would trigger an immediate change in whatever she was doing often for the worse.
After much discussion of privacy versus peace of mind a wide angle door viewer was installed that enabled the family to look in on Anna without disturbing her.
Scald Prevention
Because Anna was able to turn the faucets on “full blast” by herself scald prevention became a concern. We installed a whole house tempering valve on the hot water heater that prevents hot water from being delivered at a dangerous temperature.
George Braddock is the founder of Creative Housing Solutions www.gbcchs.com a leading housing consultant and general contractor with a 25 year proven track record in pioneering the implementation of person-centered planning principles to more than 1,500 projects and homes for people with autism and other disabilities. He is also an ARCHway Consortium member.
This blog article is a first of many articles ARCHway will be posting that George Braddock has written in order to show you the many examples of housing adaptations and modifications for improving the quality of homes for people with autism.
ANNA’S STORY: Severe Autism
Topics Covered:
• Windows
• Backyards
• Water play/Indoors and Outside
• Fencing
• Pica: Eating Hedge Plants
• Lights
• Bathroom
• Kitchen
• Entertainment Center
• Flooring
• Privacy vs. Monitoring
• Scald Prevention
Vigilance and Duct Tape Aren’t Enough Anymore
In 1997 Anna’s parents wrote to us in desperation. Anna was “getting bigger, stronger and quicker, doing things she couldn’t do before”. She was breaking the windows. “Anna has an intense interest in moving water and her powerful need for constant access to water to calm herself is creating serious health and safety issues. She turns on faucets full blast and plays in the water damaging the building and stressing her family.”It is important to access the whole-person in the context of their environment before you design.
What the professionals told us:
• Anna experiences Autism at a severe level further complicated by enormous sensory processing problems making Anna one of the most challenging children they have encountered.
• Anna is constantly bombarded by sights, sounds, sensations and information that her brain cannot process. The filters and sorters in her brain just don’t work properly.
• Ordinary activities such as eating, sleeping and sitting down are a constant struggle for Anna.
We learned from Anna:
• She needs a home where she can do the things she likes to do without negative consequences.
• She needs a home that makes sense to her and where she is safe.
• Her home must be durable and withstand her “testing the strength of its materials”.
• She wants/needs a home where she can be in control and make choices.
• She needs a home where there are interesting things to do outside and inside that support her love of water and movement.
• Change and surprises are very difficult for Anna/
Anna’s Family Needs a Home:
• Where we can really enjoy Anna without constant intervention and re-direction.
• That will enable our family to remain together in our family home.
• That will keep everyone safe.
• That will allow Anna to safely use the bathroom the way she wants without harm or damage.
• That will provide Anna choices in preferred activities inside and outside the home.
• That is easily modified and adaptable to our family’s changing interests, abilities, needs and lifestyle.
PROJECT GOAL: A safe and sound family home where supports can be always aware of Anna’s activities and whereabouts to help her stay safe. The home needs to be a place where she can do the things she enjoys and learn new skills without hurting herself or others or damaging the building.
Disability is a consequence of the wrong environment.
Windows
Our work began with the most pressing health and safety concerns. Anna was banging on the large single-glazed picture window in the living room and kicking the window next to her bed. Anna had already broken other windows. The family had put up plexi-glass but it made their home “feel like a battle zone”.
New 3/8 inch tempered glass Lexan installed over the existing window
Plexi-glass, Lexan or other poly-carbonate materials will protect glass from breakage. However, it scratches easily and discolors over time. More importantly, it makes the home “feel like a war zone”.
The sliding glass door and other targeted windows in the house were replaced with tempered glass.
Tempered glass is extremely strong. If it is broken it disintegrates into hundreds of small harmless pieces. Typically ¼ inch glass is placed on the inside and 1/8 inch glass laminated to the outside; this will withstand most heavy abuse. If a person uses tools or has significant head banging or kicking behaviors, 3/8 inch glass can be installed which will withstand extreme testing.
A window was added in the dining room to provide a view to the back yard. It is critical that Anna’s whereabouts and activities are known so that she can remain safe.
It is important to support the needs of the individual and their caregivers.
Backyard
Anna loves to be active in her backyard. She particularly loves running water and the stimulation of swinging. At first a standard backyard swing was adequate. But over time she out-grew it but not her love for the vestibular stimulation it provides. A new appropriate swing was required.
Anna’s fascination with running water was damaging the backyard and undermining the foundation of the house. The watering “square” and a drainage system were installed to collect and route water away from the house. Anna could do the things she loved to do without harming anyone or damaging the house.
The needs and lifestyle of a person with disabilities changes over time.
Fencing
A large Arborvitae provides protection and privacy in the backyard. Unfortunately it is poisonous and can cause seizures if ingested. By installing a coloured wire fence inside the hedge line the privacy afforded by the hedge was preserved.
Anna is all wrapped up in the fabric the family had installed to keep her from eating the hedge.Safeguarding the reputation of a person with disability is paramount.
Lights
Standard glass ceiling globes were easily broken by balls and other flying objects. These were replaced with wire protected lenses or recessed cans.
Health and safety is improved for everyone in this simple, cost effective modification.
The Bathroom
“Anna’s water play, incontinence and perpetual motion is destroying our bathroom and creating constant stress.”
• Because Anna likes to take 5-10 baths each day, the bathroom floor is always wet and slippery. We use 25-30 towels to mop up excessive water each day.
• Anna pounds on the window and the mirror.
• “Anna is bigger, stronger and quicker. She turns the faucet on full-blast. She gets upset when we run out of hot water.
• “We are afraid Anna will get scalded. We are afraid to leave her alone in the bathroom.”
• Standing water is unsanitary and a slip-hazard.
• “Anna jumps vigorously in and out of the tub.”
• “We have no place to store wet items or bath toys. The existing two-sink vanity is impractical.”
Anna spends many hours each day in the bathroom in intense water play, a source of tremendous stress on her family and damaging to the physical structure of the house. Based on an evaluation of the space, Anna’s desires and her family’s needs, a remodel plan was developed to improve the layout and technical performance of the bathroom. Grab bars, impervious materials, heated surfaces, improved lighting, durable fixtures and other elements were introduced.
New Vanity and Tub/ Shower
Radiant heat mat under the tile keeps the floor warm and helps it to dry faster.Floor drain eliminates need for 25-30 towels to mop up excessive water after every bath
•Old toilet area is now a place to store wet items
•Tempered glass mirror
Basket provides place to store wet toys. Window with 3/8” tempered glass
Anna will not use the existing toilet.
The space is cramped making it difficult to assist.
There needs to be additional room around the toilet.
It needs to support a toileting ritual that makes sense for her.
The space needs to be inviting and comfortable for Anna.
The new toilet location provides adequate room to assist.
It is bright and inviting.
The area is warmed by the floor heat.
Tile surfaces are easily cleaned and sanitized.
Shelves support use of picture schedules.
The evaluation of the completed project and its effect on Anna’s life shows that she can now do what she clearly enjoys without negative consequences. Safety is improved, damage to the building is minimized and her family experiences significantly less stress and more freedom because they spend less time doing intensive supervision and clean-up. Anna has exhibited a reduction in behavioral episodes because she experiences more choice, control and independence in her life.
The Kitchen
The kitchen in Anna’s home has always been the center of activity. When she was little she had to have the water running near-by in order to eat her food. When she was not in the bathroom or outside playing with water, she was at the kitchen sink.
“Anna’s water activities at the sink have caused significant damage to wood, walls, sheetrock, countertops and cabinets.” Dry rot has and will continue to occur.
Plastic installed to protect walls and countertops detracted from the feeling of home.
A supportive physical environment promotes individual independence and empowerment.
Entertainment Center
Anna needs a water proof entertainment center because she will fill her mouth with water and will spit on the TV when she is upset. There were six water-logged televisions in the garage.
Anna’s bedroom is her ‘safe place’. The TV and VCR are her favorite ‘comforting things’. Her large photo albums, favorite tapes, story books and beads need to be in her bedroom.
Over time Anna gained more experience and developed the capacity to use her TV without assistance. With more control came more opportunities. She no longer needs a locked cabinet in her room and freely uses the entertainment center in the family room.
Flooring
Although carpeting is ‘home like’, even the best of it is difficult to keep clean or sanitize. Anna “has toileting accidents, food spills and then there is always the water”. The biggest issue is in the bedroom, her sleeping and leisure space. We need to be able to clean and deodorize this environment easily.
The carpet was replaced with a commercial grade vinyl. The material was coved up the walls to protect the edges from water. Throw rugs that can be simply picked up and laundered as needed help to soften the look of the vinyl floor coverings.
Privacy Versus Peace of Mind
When Anna was in her safe place, her family needed to know if she was okay or needed their help to stay safe. When they opened the door to check on her, the interruption would trigger an immediate change in whatever she was doing often for the worse.
After much discussion of privacy versus peace of mind a wide angle door viewer was installed that enabled the family to look in on Anna without disturbing her.
Scald Prevention
Because Anna was able to turn the faucets on “full blast” by herself scald prevention became a concern. We installed a whole house tempering valve on the hot water heater that prevents hot water from being delivered at a dangerous temperature.
Thursday, March 18, 2010
Adults with Autism Need a Good Quality of Life
Adults with Autism Need a Good Quality of Life
For those interested in exploring quality of life issues fully, go to our website at www.myarchway.org and Join ARCHway. Also go to our social networking site at www.myarchway.ning.com
Below, a parent of a teenager with autism gives a very detailed and excellant description in simple, every day terms of quality of life factors that contribute to a very good life for people on the autism spectrum.
This article is taken fully from: An Alternative View on Outcome in Autism – Written by Lisa Ruble and Nancy Dalrymple, Focus on Autism & Other Developmental Disabilities, Spring, 1996. Vol 11, Issue 1. For full article, go to: http://www.starautism.louisville.edu/images/pdf/rubleanddalrymple1996.pd...
A person with autism should participate in activities with family members or close friends (e.g., travel, eat out, shop, favorite games or activities, church, dinners). Included in family/close friends’ events and passages (e.g., holiday gatherings, weddings, funerals, births, birthday celebrations, illnesses and accidents). Contact with family members and friends as frequently as desired (e.g., make and receive phone calls, write and receive letters, send and receive cards, visits, invitations.)
A person with autism should be active and comfortable in familiar community:
Ride transportation, walk, ride with family or friend, ride bike;
Shop for groceries, clothes, gifts, cards, crafts, needed equipment, personal
Choose movies, videos, places to eat out, ordering in;
Go to special events: sports, circus, shows, movies concerts;
Participate in the YMCA, bike club, or other interest or philanthropic clubs.
A person with autism should work at a valued job to earn money:
Like job and feel good about doing it;
Supported by people on the job;
Can do job competently; know performance is good.
A person with autism should enjoy good health and wellness through proper nutrition, awareness of weight management, and access to appropriate medications when and if needed.
A person with autism should have own special possessions and personal space to keep as desired and has time and space to be alone when desired.
A person with autism should makes choices about purchases and manages own money to the greatest extent possible.
A person with autism should receive enough information to make valid choices and not have to refuse them because of lack or information, lack of experience, or lack of support.
For those interested in exploring quality of life issues fully, go to our website at www.myarchway.org and Join ARCHway. Also go to our social networking site at www.myarchway.ning.com
Below, a parent of a teenager with autism gives a very detailed and excellant description in simple, every day terms of quality of life factors that contribute to a very good life for people on the autism spectrum.
This article is taken fully from: An Alternative View on Outcome in Autism – Written by Lisa Ruble and Nancy Dalrymple, Focus on Autism & Other Developmental Disabilities, Spring, 1996. Vol 11, Issue 1. For full article, go to: http://www.starautism.louisville.edu/images/pdf/rubleanddalrymple1996.pd...
A person with autism should participate in activities with family members or close friends (e.g., travel, eat out, shop, favorite games or activities, church, dinners). Included in family/close friends’ events and passages (e.g., holiday gatherings, weddings, funerals, births, birthday celebrations, illnesses and accidents). Contact with family members and friends as frequently as desired (e.g., make and receive phone calls, write and receive letters, send and receive cards, visits, invitations.)
A person with autism should be active and comfortable in familiar community:
Ride transportation, walk, ride with family or friend, ride bike;
Shop for groceries, clothes, gifts, cards, crafts, needed equipment, personal
Choose movies, videos, places to eat out, ordering in;
Go to special events: sports, circus, shows, movies concerts;
Participate in the YMCA, bike club, or other interest or philanthropic clubs.
A person with autism should work at a valued job to earn money:
Like job and feel good about doing it;
Supported by people on the job;
Can do job competently; know performance is good.
A person with autism should enjoy good health and wellness through proper nutrition, awareness of weight management, and access to appropriate medications when and if needed.
A person with autism should have own special possessions and personal space to keep as desired and has time and space to be alone when desired.
A person with autism should makes choices about purchases and manages own money to the greatest extent possible.
A person with autism should receive enough information to make valid choices and not have to refuse them because of lack or information, lack of experience, or lack of support.
People with Autism Don't Like to be Labeled "Autistic People"
People with Autism Don't Like to be Labeled "Autistic People"
Nobody Likes to be Labeled
The country’s fastest growing developmental disorder, autism is now a national epidemic. One in every 91 births results in a diagnosis of autism spectrum disorder. With an annual growth rate of 10 to 17 percent in the U.S.A., a new case of autism is diagnosed every 20 minutes, 24,000 new cases every year. From the best current statistics, a total of 1 to 5 million Americans carry a diagnosis on the autism spectrum.
Autism is a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Children and adults with autism have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. As a “spectrum” disorder, autism affects each individual differently and to varying degrees.
In recent years, since the introduction of Augmentative Communication devices, such as portable laptop computers that provide language for the person with autism, we have now come to understand that many people with autism have a broad range of feelings, interests, opinions, and keen intellectual capacity. Just like everyone else, at the deepest core, people with autism are sweet, 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, very challenging and just like anyone else, 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. That simply is not true.
Some in the public believe or misunderstand the occasional unique talents of people with autism as indicating that they are "autistic savants" with special extra sensory perceptions, photographic memories or idiosyncratic genius. This is not usually the case, even though some persons with autism have surprising gifts—some never forget a name, others who may appear unable to communicate normally may be able to recite accurately the first 200 names in their video collections.
It is all too easy to stereotype people with autism as bizarre and to forget the possible richness of their inner world of the possibility of their living a satisfying life. Still, we should not ignore the real challenges faced by people with autism nor the traits that can interfere with adaptation to life skills and to relationships.
Overview of Autistic Traits*
Inappropriate laughing or giggling
No real fear of dangers
Apparent insensitivity to pain
May not want cuddling or in contrast, may hug too forcefully
Sustained unusual or repetitive play
Uneven physical or verbal skills
May avoid eye contact
May prefer to be alone
Difficulty in expressing needs; may use gestures
Inappropriate attachments to objects
Insistence on sameness
Echoes words or phrases
Inappropriate response or no response to sound
Spins objects or self
Difficulty in interacting with others
Insistence on Sameness
Easily overwhelmed by change, even slight changes.
Highly sensitive to environmental influences, and sometimes engage in rituals.
They are anxious and tend to worry obsessively when they do not know what to expect. Fatigue, and sensory overload easily throw them off balance.
Transitions are difficult.
Impairment of Social interaction
Seems naive, unaware of "the ways of the world", egocentric.
May dislike physical contact
Talks "at" people instead of to them
Does not understand jokes, irony, or metaphors
Monotone or stilted tone of voice
Inappropriate gaze and body language
Insensitive and lacks tact
Misinterpret social cues, doesn't understand facial expression and body language.
Restricted Range of Interests
May have intense fixations (sometimes collecting unusual things).
They tend to relentlessly "lecture" on areas of interest, ask repetitive questions about interests, and have trouble letting go of ideas.
They often follow their own inclinations regardless of external demands, and sometimes refuse to learn about anything outside their limited field of interest.
Sensory Issues and Poor Concentration
May often seem off task and distracted by internal or external stimuli or sensory issues.
Acts disorganized, not knowing where to start or end.
Unusual reactions to different stimulus
Poor Motor Coordination
May be physically clumsy and awkward. May seem accident-prone and have a hard time playing games involving motor skills.
They often have fine motor deficits that can cause penmanship problems that affect their ability to form letters or write clearly.
Language Difficulties
May be nonverbal, minimally verbal, or may seem behind in communication. In contrast, may be very advanced (sound like a walking dictionary or encyclopedia).
Tend to be very literal.
Their images are concrete, and abstraction is poor.
May give the impression that they understand what they are talking about, when in reality they may be merely parroting what they have heard or read.)
Rely on pictures more than understanding of words and may have reading difficulties
Poor auditory processing.
One might say that a person with autism struggles with autistic challenges or has many unusual autistic behavior patterns. That would be correct, because along with communication problems and difficulties in making and maintaining friendships, many people with autism struggle with sensory integrative dysfunctions. This may cause a person with autism to feel a much more exaggerated sensation across some or all of their senses. In some instances, sounds can be heard as very loud; lights can be seen as extremely bright; certain foods and flavors may taste very strong or unpalatable; and physical sensations can be very irritating.
Some people with autism find that it brings them comfort to rock back and forth or spin in circles in a manner that appears odd to others.
Still others find it threatening to be in crowds or groups of people because they may have difficulty reading another person’s facial expressions and as a result, may misinterpret another person’s intentions.
In this field, words and terms can be important. Regardless of how high or low functioning a person with autism may be, he or she is a person in his or her own right, first and foremost. He or she is a person who happens to be struggling with and trying to deal with the difficult challenges and symptoms of an autism spectrum disorder to a greater or lesser degree.
We believe it is more inclusive, sensitive and respectful to refer to a person who is diagnosed with autism as a “person with autism,” not as an “autistic person.” The same idea applies when you speak to a parent who has a child or an adult with autism. It shows more respect to refer to them as a parent of a child with autism, not the parent of an autistic child. Just like all parents, we love our children, whether they have a diagnosis on the autism spectrum or if we are parents of “typical” children. A parent is a parent, regardless of the challenges our children struggle with. If we refer to a person on the autism spectrum as a person with autism, not an autistic person, we better allow that person their dignity as an equal member of society.
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
Nobody Likes to be Labeled
The country’s fastest growing developmental disorder, autism is now a national epidemic. One in every 91 births results in a diagnosis of autism spectrum disorder. With an annual growth rate of 10 to 17 percent in the U.S.A., a new case of autism is diagnosed every 20 minutes, 24,000 new cases every year. From the best current statistics, a total of 1 to 5 million Americans carry a diagnosis on the autism spectrum.
Autism is a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Children and adults with autism have difficulties in verbal and non-verbal communication, social interactions, and leisure or play activities. As a “spectrum” disorder, autism affects each individual differently and to varying degrees.
In recent years, since the introduction of Augmentative Communication devices, such as portable laptop computers that provide language for the person with autism, we have now come to understand that many people with autism have a broad range of feelings, interests, opinions, and keen intellectual capacity. Just like everyone else, at the deepest core, people with autism are sweet, 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, very challenging and just like anyone else, 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. That simply is not true.
Some in the public believe or misunderstand the occasional unique talents of people with autism as indicating that they are "autistic savants" with special extra sensory perceptions, photographic memories or idiosyncratic genius. This is not usually the case, even though some persons with autism have surprising gifts—some never forget a name, others who may appear unable to communicate normally may be able to recite accurately the first 200 names in their video collections.
It is all too easy to stereotype people with autism as bizarre and to forget the possible richness of their inner world of the possibility of their living a satisfying life. Still, we should not ignore the real challenges faced by people with autism nor the traits that can interfere with adaptation to life skills and to relationships.
Overview of Autistic Traits*
Inappropriate laughing or giggling
No real fear of dangers
Apparent insensitivity to pain
May not want cuddling or in contrast, may hug too forcefully
Sustained unusual or repetitive play
Uneven physical or verbal skills
May avoid eye contact
May prefer to be alone
Difficulty in expressing needs; may use gestures
Inappropriate attachments to objects
Insistence on sameness
Echoes words or phrases
Inappropriate response or no response to sound
Spins objects or self
Difficulty in interacting with others
Insistence on Sameness
Easily overwhelmed by change, even slight changes.
Highly sensitive to environmental influences, and sometimes engage in rituals.
They are anxious and tend to worry obsessively when they do not know what to expect. Fatigue, and sensory overload easily throw them off balance.
Transitions are difficult.
Impairment of Social interaction
Seems naive, unaware of "the ways of the world", egocentric.
May dislike physical contact
Talks "at" people instead of to them
Does not understand jokes, irony, or metaphors
Monotone or stilted tone of voice
Inappropriate gaze and body language
Insensitive and lacks tact
Misinterpret social cues, doesn't understand facial expression and body language.
Restricted Range of Interests
May have intense fixations (sometimes collecting unusual things).
They tend to relentlessly "lecture" on areas of interest, ask repetitive questions about interests, and have trouble letting go of ideas.
They often follow their own inclinations regardless of external demands, and sometimes refuse to learn about anything outside their limited field of interest.
Sensory Issues and Poor Concentration
May often seem off task and distracted by internal or external stimuli or sensory issues.
Acts disorganized, not knowing where to start or end.
Unusual reactions to different stimulus
Poor Motor Coordination
May be physically clumsy and awkward. May seem accident-prone and have a hard time playing games involving motor skills.
They often have fine motor deficits that can cause penmanship problems that affect their ability to form letters or write clearly.
Language Difficulties
May be nonverbal, minimally verbal, or may seem behind in communication. In contrast, may be very advanced (sound like a walking dictionary or encyclopedia).
Tend to be very literal.
Their images are concrete, and abstraction is poor.
May give the impression that they understand what they are talking about, when in reality they may be merely parroting what they have heard or read.)
Rely on pictures more than understanding of words and may have reading difficulties
Poor auditory processing.
One might say that a person with autism struggles with autistic challenges or has many unusual autistic behavior patterns. That would be correct, because along with communication problems and difficulties in making and maintaining friendships, many people with autism struggle with sensory integrative dysfunctions. This may cause a person with autism to feel a much more exaggerated sensation across some or all of their senses. In some instances, sounds can be heard as very loud; lights can be seen as extremely bright; certain foods and flavors may taste very strong or unpalatable; and physical sensations can be very irritating.
Some people with autism find that it brings them comfort to rock back and forth or spin in circles in a manner that appears odd to others.
Still others find it threatening to be in crowds or groups of people because they may have difficulty reading another person’s facial expressions and as a result, may misinterpret another person’s intentions.
In this field, words and terms can be important. Regardless of how high or low functioning a person with autism may be, he or she is a person in his or her own right, first and foremost. He or she is a person who happens to be struggling with and trying to deal with the difficult challenges and symptoms of an autism spectrum disorder to a greater or lesser degree.
We believe it is more inclusive, sensitive and respectful to refer to a person who is diagnosed with autism as a “person with autism,” not as an “autistic person.” The same idea applies when you speak to a parent who has a child or an adult with autism. It shows more respect to refer to them as a parent of a child with autism, not the parent of an autistic child. Just like all parents, we love our children, whether they have a diagnosis on the autism spectrum or if we are parents of “typical” children. A parent is a parent, regardless of the challenges our children struggle with. If we refer to a person on the autism spectrum as a person with autism, not an autistic person, we better allow that person their dignity as an equal member of society.
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
Why Parents of Adults with Autism Need to Develop a Written Life Plan
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
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
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
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