OREGON (OHN) – According to the Autism Society Of Oregon, our state has the one of the highest rates of Autism in the U.S. There are over 50 resources in Oregon dedicated to adults, families, and children with Autism.
Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others.
In March 2014, the Centers for Disease Control and Prevention issued their ADDM autism prevalence report. The report concluded that the prevalence of autism had risen to 1 in every 68 births in the United States and almost 1 in 54 boys.
Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause of autism, but increased awareness and funding can help families today.
Know the signs: Early identification can change lives
Autism is treatable. Children do not “outgrow” autism, but studies show that early diagnosis and intervention lead to significantly improved outcomes..
Here are some signs to look for in the children in your life:
- Lack of or delay in spoken language
- Repetitive use of language and/or motor mannerisms (e.g., hand-flapping, twirling objects)
- Little or no eye contact
- Lack of interest in peer relationships
- Lack of spontaneous or make-believe play
- Persistent fixation on parts of objects
The History Of Asperger’s Syndrome
Asperger’s Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger, who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger’s Disorder was simply a milder form of autism and used the term “high-functioning autism” to describe these individuals. Uta Frith, a professor at the Institute of Cognitive Neuroscience of University College London and editor of Autism and Asperger Syndrome, describes individuals with Asperger’s Disorder as “having a dash of Autism.”
Asperger’s Disorder was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger’s Disorder a less severe form of autism. In 2013, the DSM-5 replaced autism, Asperger’s Disorder and other pervasive developmental disorders with the umbrella diagnosis of autism spectrum disorder.
Characteristics
What distinguishes Asperger’s Disorder from autism are the less severe symptoms and the absence of language delays. Children with Asperger’s Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger’s Disorder may just seem like a normal child behaving differently.
Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger’s Disorder. Individuals with Asperger’s Disorder usually want to fit in and have interaction with others; they simply don’t know how to do it. They may be socially awkward, not understand conventional social rules, or show a lack of empathy. They may have limited eye contact, seem unengaged in a conversation, and not understand the use of gestures.
Interests in a particular subject may border on the obsessive. Children with Asperger’s Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowledge categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.
One of the major differences between Asperger’s Disorder and autism is that, by definition, there is no speech delay in Asperger’s. In fact, children with Asperger’s Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or may be formal, but too loud or high-pitched. Children with Asperger’s Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.
Another distinction between Asperger’s Disorder and autism concerns cognitive ability. While some individuals with autism have intellectual disabilities, by definition a person with Asperger’s Disorder cannot possess a “clinically significant” cognitive delay and most possess average to above average intelligence.
While motor difficulties are not a specific criterion for Asperger’s, children with Asperger’s Disorder frequently have motor skill delays and may appear clumsy or awkward.
Diagnosis
Diagnosis of Asperger’s Disorder has increased in recent years, although it is unclear whether it is more prevalent or more professionals are detecting it. When Asperger’s and autism were considered separate disorders under the DSM-IV, the symptoms for Asperger’s Disorder were the same as those listed for autism; however, children with Asperger’s do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger’s, a child must have normal language development as well as normal intelligence. The DSM-IV criteria for Asperger’s specified that the individual must have “severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities that must cause clinically significant impairment in social, occupational or other important areas of functioning.”
The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with autism and other PDDs. Early diagnosis is also important as children with Asperger’s Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently
Asperger’s Syndrome
Asperger’s Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger, who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger’s Disorder was simply a milder form of autism and used the term “high-functioning autism” to describe these individuals. Uta Frith, a professor at the Institute of Cognitive Neuroscience of University College London and editor of Autism and Asperger Syndrome, describes individuals with Asperger’s Disorder as “having a dash of Autism.”
Asperger’s Disorder was added to the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger’s Disorder a less severe form of autism. In 2013, the DSM-5 replaced autism, Asperger’s Disorder and other pervasive developmental disorders with the umbrella diagnosis of autism spectrum disorder.
Characteristics
What distinguishes Asperger’s Disorder from autism are the less severe symptoms and the absence of language delays. Children with Asperger’s Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger’s Disorder may just seem like a normal child behaving differently.
Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger’s Disorder. Individuals with Asperger’s Disorder usually want to fit in and have interaction with others; they simply don’t know how to do it. They may be socially awkward, not understand conventional social rules, or show a lack of empathy. They may have limited eye contact, seem unengaged in a conversation, and not understand the use of gestures.
Interests in a particular subject may border on the obsessive. Children with Asperger’s Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowledge categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.
One of the major differences between Asperger’s Disorder and autism is that, by definition, there is no speech delay in Asperger’s. In fact, children with Asperger’s Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature, or may be formal, but too loud or high-pitched. Children with Asperger’s Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give-and-take nature of a conversation.
Another distinction between Asperger’s Disorder and autism concerns cognitive ability. While some individuals with autism have intellectual disabilities, by definition a person with Asperger’s Disorder cannot possess a “clinically significant” cognitive delay and most possess average to above average intelligence.
While motor difficulties are not a specific criterion for Asperger’s, children with Asperger’s Disorder frequently have motor skill delays and may appear clumsy or awkward.
Diagnosis
Diagnosis of Asperger’s Disorder has increased in recent years, although it is unclear whether it is more prevalent or more professionals are detecting it. When Asperger’s and autism were considered separate disorders under the DSM-IV, the symptoms for Asperger’s Disorder were the same as those listed for autism; however, children with Asperger’s do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger’s, a child must have normal language development as well as normal intelligence. The DSM-IV criteria for Asperger’s specified that the individual must have “severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities that must cause clinically significant impairment in social, occupational or other important areas of functioning.”
The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with autism and other PDDs. Early diagnosis is also important as children with Asperger’s Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently.
PACIFIC NORTHWEST AUTISM RESOURCES
211 info
For people living in Oregon and Southwest Washington seeking information on affordable housing, healthcare, food assistance, and clinics. Access on-line or by phone by dialing 211.
Abilitree
Empowers people with disabilities to grow their independence, productivity and inclusion in community life. Abilitree offers Job Placement, Job Coaching, and Life Skills in Bend, Oregon.
Adult Learning Systems of Oregon (ALSO)
ALSO is a not for profit organization supporting people with developmental and intellectual challenges. They offer a variety of residential and vocational supports to cater to each person¹s support needs. ALSO prides itself in supporting people one person at a time.
Advocates of Children That have Special Needs (A.C.T.S.N. pronounced “action”)
A support group located in Wilsonville for parents and caregivers that have a child with special needs including autism. A.C.T.S.N. offers information, assistance, and support through monthly group meetings, formal trainings, and spokespeople.
All Born In
A movement in pursuit of a more inclusive civil society. ABI is a sister organization to the Northwest Down Syndrome Association, and is the home base for work on inclusive schools and communities in the Pacific Northwest.
ARC of Oregon
Advocates for the rights of adults and children with intellectual and developmental disabilities to have full community participation. Find your county’s local chapter and learn about Oregon Special Needs Trust (OSNT), Guardianship, Advocacy and Planning Service (GAPS), and the basics about self directed support services for adults.
Autism Empowerment
A 501(c)3 public charity dedicated to making life better and more meaningful for individuals and families in the Autism and Asperger communities locally, nationally and globally. We serve all ages and abilities and promote 4 foundational pillars of positivity: Accept, Enrich, Inspire and Empower. Our vision is an engaged Autism and Asperger’s community that connects individuals, families, educators and care providers with valued resources and with each other. We provide free or low-cost special events, programs, trainings, consulting and support services. Everyone on our Board of Directors is either on the autism spectrum or related to someone who is. We are proactive autism allies seeking to build a better world.
Autism Insurance for Oregon
Asking legislators to adopt a comprehensive Autism Health Insurance Reform bill in the 2012 legislative session. Working to enforce the laws that already exist, to get insurers to pay for medically necessary treatment for autism. Their recent success with Kaiser and Pacific Source have opened the door for coverage of intensive treatments like Applied Behavior Analysis (ABA). Learn how to file an appeal and subscribe to their mailing list.
Autism Parent Training Program at Providence Neurodevelopmental Center for Children Teaching social-communication skills to children with autism and related disorders: A parent-implemented approach.
Autism Research & Resources of Oregon (ARRO)
Located in Beaverton, the ARRO Westside Family & Community is the first phase of ARRO’s greater vision of building a ”center of excellence in the field of autism research and resources in the State of Oregon.” The ARRO Westside Center provides a place to meet, share ideas, get support and provide autism related services.
Autietots
Provides listings of autism-friendly businesses and services in Portland, Seattle and the Pacific Northwest.
AutismAsperger.net
Web home of Stephen Shore, author, speaker and Assistant Professor of Special Education at Adelphi University. His site serves to create greater awareness of the autism spectrum.
Autismoregon.org (run by Parents of Autistic Children [POAC])
A site for parents, teachers, individuals, family and community to search for resources.
Autism Research Institute (ARI)
Located in San Diego,California, ARI is dedicated to research and outreach to individuals with autism and their families. ARI conducts research, and disseminates the results of research, on the causes of autism and on methods of preventing, diagnosing and treating autism. E-newsletter available. Free weekly webinars available. Click here for a schedule
Autism Society of America (ASA)
The nation’s leading grassroots autism organization. The mission of ASA is to improve the lives of all affected by autism by increasing public awareness about the day-to-day issues faced by people on the spectrum, advocating for appropriate services for individuals across the lifespan, and providing the latest information regarding treatment, education, research and advocacy. ASO is the state chapter for Oregon.
Autism Society of Oregon (ASO) – Lane County Chapter
Works closely with local grassroots autism organizations – Bridgeway House, KindTree Productions, 4J School District, Direction Service, Hilyard Community Center, U of O, Autism Training and Support, Autism Speaks, and many others.
Autism Society of Washington (ASW)
State chapter of the national organization Autism Society of America, and the sister chapter to ASO.
Autism Source.org
Whether you need an advocate for an IEP meeting, a social group for young adults or an understanding doctor, the Autism Society’s Autism SourceTM national resource database of autism-related services and supports can help.
Autism Training and Research Center at PSU, Graduate School of Education
Provides training and consulting on evidence-based practices to educators and parents of individuals with autism spectrum disorders and conducts research in areas that are important to educators and families of individuals with autism spectrum disorders.
Bridgeway House
Located in Eugene, serving the needs of children with autism and related disabilities while educating and supporting their families through a wide array of services, including treatments, therapies, social groups, fitness classes, education, support groups, advocacy, and more.
CaCoon (CAre COordinatiON)
A service for families with children from birth to age 21 who have (or are at risk of having) a chronic health condition or disability. CaCoon care coordination services are offered by public health nurses who are specially trained to care for children and youth with special needs.
CAST (Center for Applied Special Technology)
CAST is a nonprofit leader in education, working to improve learning opportunities and outcomes for all individuals through Universal Design for Learning.
Child Development and Rehabilitation Center (CDRC) Autism Program
At Oregon Health & Science University provides services to children on the autism spectrum: diagnostic evaluations, treatment and consultation to families. As part of the Autism Treatment Network (ATN), the CDRC Autism Program enrolls interested families in a patient registry, which allows for a better understanding of the medical conditions associated with autism.
Collaborative Problem Solving
From the website: “Lives in the Balance is the non-profit organization founded by child psychologist Dr. Ross Greene, author of The Explosive Child and Lost at School, and originator of the Collaborative Problem Solving (CPS) approach. The CPS model is highly effective with kids often described as angry, difficult, defiant, and oppositional. While those terms don’t tell the true tale, this website contains a ton of information – streaming video, an extensive Listening Library, and a boatload of additional resources — to help you learn about and implement the research-based CPS model and provide you with the strategies and support you need to help kids with social, emotional, and behavioral challenges.”
Community Action Child Care Resource & Referral of Marion, Polk & Yamhill Counties
Community Action works primarily in Marion and Polk Counties with partner agencies, local leaders, government officials, and other organizations to identify community needs, gather resources, and direct those resources where they will have the greatest impact.
The Daniel Jordan Fiddle Foundation for Adult Autism
A national organization focused on adults living with Autism Spectrum Disorders (ASD.) It is a volunteer-run organization whose mission is to develop and fund
The Daniel Jordan Fiddle Foundation Signature Programs that address critical needs and gaps in services and supports for adults living with ASD.
Developmental Disabilities (DD) Training Co-Op Class Calendar
A calendar of training classes offered by the Portland area DD Training Co-Op. Classes are designed to provide affordable training to people who provide care and support to individuals with disabilities. Classes are open to the public however, registration preference is extended to: DD Training Co-Op member agencies’ staffs; DD certified foster parents; and family members of individuals receiving DD services within the Portland area.
The Division for Early Childhood
The Division for Early Childhood promotes policies and advances evidence-based practices that support families and enhance the optimal development of young children who have or are at risk for developmental delays and disabilities.
Easter Seals of Oregon
Serves children and adults with disabilities through program centers in Portland and Medford. They offer comprehensive pediatric therapy, camping, employment services, warm water aquatics, money management program, healthy start, postpartum depression prevention program and parenting classes. Recreation & Respite (R&R) care offered only in Medford. For more information on the R&R program, please click here.
Emerging Leaders Northwest (ELNW)
Organized through the Oregon Health Sciences University and the University Center for Excellence on Developmental Disabilities ELNW are leaders ages 13-30 with disabilities who provide support to other young people with disabilities through community, web-based information and guidance. They offer workshops, trainings, mentorships, internships, and an interactive website. There is also an Emerging Leaders chapter in Salem.
Families for Community (FFC)
Located in Medford, helps to support parents that have a child experiencing disability. They have six ways to get connected: a blog, events, Facebook, an online community support group, one for GFCF members, and parent support groups. They provide mentoring parent partners, and hold trainings and workshops.
Family And Community Together (FACT)
A family leadership organization for individuals and their families experiencing disability. FACT is the Parent Training and Information Center in Oregon, providing free support and information to parents throughout Oregon who are navigating the Special Education process. FACT has a Special Education Helpline (at 1-888-988-FACT), holds free trainings throughout the state, offers a free parent mentoring service (FACT Parent 2 Parent). CLICK HERE to subscribe to their e-newsletter for information about their programs and events.
FACT’s IEP Training is now available online! “Understanding the IEP: Development, Process and Your Critically Important Role on the Team.” This online training covers important concepts including: the purpose of the IDEA; common definitions; reviewing the IEP page by page; your involvement as a parent; and fostering communication with your child’s IEP team. To watch, click here.
GEM Children’s Foundation
Located in Salem, connects children with special needs and their families to existing services and works to increase access to resources and information. Through grants and collaborative efforts, they will support community organizations serving children with special needs. In partnership with ASO, they run Game Clubs in Salem for children on the Autism Spectrum.
GKSN -Grandparents of Kids with Special Needs
On the GKSN website, grandparents have a chance to meet other grandparents through Yahoogroup or Facebook groups, share ideas for supporting their kids and grandkids, and even post pictures of their grandkids!
Global Autism Collaboration (GAC)
Networking and collaborating with autism organizations worldwide to generate necessary legal and social change to deal with the global autism health crisis. From Autism Research Institute.
Harper’s Playground
An inclusive playground at Arbor Lodge Park where children and adults of all abilities can play together.
Help Autism Now Society (HANS)
Provides information and support to physicians and other medical professionals in the early recognition and diagnosis of autism. (Has easy-to-understand information about early recognition of autism & autism symptoms.)
Incight
Incight’s mission is to empower people with disabilities to become contributing members of society, by leading them through several dynamic programs focused in the areas of Education, Employment,Networking and Independence.
The Inclusion Network
Workshops, resources, trainings and articles on inclusion in schools and communities.
Jewish Family & Child Service (JFCS)
JFCS offers a wide range of human services including individual, couple, family, and group counseling, services for seniors and people with disabilities, emergency assistance and referrals during time of crisis, and other specialized assistance for Holocaust survivors. All our services are offered without regard to age, race, religion, ethnicity, gender, or sexual orientation. 503.226.7079 x 155
Journey with Julian
A blog written by Dwayne Ballen about his son, Julian, who has autism. His hope is for the blog to help people understand and appreciate individuals with autism. Dwayne Ballen lives in North Carolina, and is an award winning journalist and television sportscaster.
Kids Together
Information and resources for children and adults with disabilities. The goals of Kids Together, Inc. include a desire to remove barriers that exclude people with disabilities. We support the belief that children with disabilities, like all children, have the need to be welcomed, cherished and embraced in our communities.
Kindtree-Autism Rocks
Located in Eugene, dedicated to serving and celebrating people on the Autism Spectrum through art, recreation and community. They have a weekend-long retreat in late August for individuals on the autism spectrum and their families to have fun. See their lising in Summer Camps.
National Disability Rights Network
NDRN is the nonprofit membership organization for the federally mandated Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). Collectively, the P&A/CAP network is the largest provider of legally based advocacy services to people with disabilities in the United States.
Northwest Autism Foundation (NWAF)
Located in Oregon City, produces an Autism Resource Directory and provides continuing education to professionals in Oregon. They sponsor workshops and lectures on the latest in autism spectrum disorders and hold Autism Oasis conferences every couple years to bring scientists and doctors together to talk to parents and caregivers about current treatments for autism spectrum disorders. NWAF also offers a lending library on autism spectrum disorders that individuals can borrow and return to.
Oregon Center for Children and Youth with Special Health Needs (OCCYSHN)
Promotes coordinated, family-centered, community-based systems of care through programs and projects including: CaCoon (CAre COOrdinatioN) Program, home-visiting public-health nurses; Community Connections Network (CCN), multidisciplinary teams that meet across the state to serve specific children and to address community needs; Family Involvement Network (FIN), hiring, training, and supervising Family Liaisons, local family members of children and youth with special health needs who provide the family perspective on CCN teams; and a Medical Home offering tools and information for both providers and families. CAre COOrdinatioN and Community Connections Network are for children and youth up to age 21. All services are free regardless of income and insurance.
Oregon Child Care Resource & Referral (CCR&R)
A Statewide agency helping parents find child care including Children with Diverse Needs and Abilities. They have an online brochure, Child Care Aware, available in both English and Spanish. They partner with the Inclusive Child Care Program that helps eligible families with higher costs of care when children (up to their 18th birthday) need extra close supervision, special accommodations or other supports for safety. They have an online booklet explaining their services Open Hearts, Open Doors: Offering Inclusive Child Care.
Oregon State Parks has a program, ‘Let’s Go Camping’, in which they hold a weekend camping event just for families with a member who has autism spectrum. Tents, sleeping bags, mattress pads are provided. The total cost is $30 for a weekend for a couple/family no matter how many children. They go to many nearby parks and activities typically might include a ranger-led nature hike, hands on demonstrations and s’mores around the campfire. They also have trained volunteers there to assist around the clock. If you have interest in signing up or questions about the program, please visit Lets Go Camping or email inquiries to jimmy.childs@state.or.us.
Oregon Technical Assistance Corporation (OTAC)
Provides training for families, providers and educators on structured visual strategies that help people with autism increase independence. They also help develop plans that focus on a person’s interests, strengths, gifts and resources.
OrFIRST
A non-profit organization to help parents of children with disabilities through training, referrals, information and resources. Serving parents at Title I schools and historically underserved communities in the Portland metro area. Phone: (503) 232-0302.
Parents of Autistic Children (POAC)
Provides information to parents about behavioral intervention therapies for children on the autism spectrum. They have a comprehensive Parent Guide covering information about autism and starting a behavioral therapy program.
PEAK Parent Center
PEAK provides training, information and technical assistance to equip families of children birth through twenty-six including all disability conditions with strategies to advocate successfully for their children.
Portland Asperger’s Network (PAN)
A parent support organization helping families and individuals under the autism umbrella, including Asperger’s Syndrome, High Functioning Autism, and PDD-NOS. They run an online community, monthly Game Club in West Linn; a quarterly parent support group, a Teen Club, monthly Me Time meetings (for caregivers of adults) and a Girl Scout troop.
Portland Autism Group
A group of community-minded professionals, from many different disciplines, who are committed to providing quality services for people with autism and their families in the Portland community. Their efforts include case study and collaboration, providing services, event planning, research, and autism awareness activities. A subcommittee of ARRO, above.
Portland’s Disability Program
A division of the Office of Neighborhood Involvement providing Information and referral regarding: Local compliance, accommodation services, living with a disability, and more; Community advocacy through the Portland Commission on Disability; Engagement opportunities with city government and neighborhoods, as well as community building and awareness raising events; Voluntary Emergency Registry (VER) and Emergency Self-Preparedness workshops; Produces the biweekly Disability NEWS that features event/meeting listings, news and other information of interest to people with disabilities in Portland.
Providence Neurodevelopmental Center for Children (PNCC)
A group of pediatricians that evaluate and treat children with various developmental delays, including the medically fragile. Services include: follow up clinics for high-risk infants, physical therapy, occupational therapy, speech language therapy, aquatic therapy, augmentative communication/assistive technology, Audiology, medical nutrition, pediatric weight management, and feeding and swallowing. Locations in East Portland, West Portland, Gresham, and Newberg. Has Autism Parent Training Program.
Resources Connection of Oregon (RCO)
Located in Salem, serves adults (18 years and older) with developmental disabilities.
Ride Connection
Ride Connection, a non-profit organization, is dedicated to providing responsive, accessible transportation options for those in need. While many of our customers are older adults and people with disabilities, we strive to provide transportation solutions for the community at large. 503.528.1720 Service in Clackamas, Washington and Multnomah Counties.
Sensory Support
Sensory Support offers advocacy/consulting services to families who have a child with sensory processing disorders. Fees apply.
Social Thinking
Information and curriculum developed by Michelle Garcia Winner, Speech Language Pathologist, to help individuals with social thinking. “Social thinking is what we do when we interact with people: we think about them. And how we think about people affects how we behave, which in turn affects how others respond to us, which in turn affects our own emotions.” Winner has published Social Thinking books, holds workshops and trainings. Sign up for her e-mailed newsletter.
Special Education PTA of Portland (SEPTAP)
A district wide Special Education PTA working in partnership with local school based PTAs. They hold bi- monthly meetings, special events, and have an online forum giving members the chance to connect with each other, their school district, and resources in the community.
Swindells Resource Center of Providence Child Center
Located in Portland, Medford, Hood River and Newport. They support parents and caregivers of children who have special needs, developmental delays or disabilities by providing resources, information and education to communities throughout Oregon and southwest Washington. Has a FREE online My Child’s Life Care Notebook and Organizer that functions as a personal health record and helps parents coordinate the complex records of their child’s care, services and providers. Notebooks come in English, Spanish and Russian. Also runs an online library.
Threshold
A social service organization located in Salem that offers direct provider training services and adaptive alternative educational programs.
Resources – Special Education:
CADRE: The National Center on Dispute Resolution in Special Education
“Encouraging the use of mediation and other collaborative strategies to resolve disagreements about special education and early intervention programs.” National group with listings in Oregon for special education mediators.
Family And Community Together (FACT)
FACT is the Parent Training and Information Center in Oregon, providing free support and information to parents throughout Oregon who are navigating the Special Education process. FACT has a Special Education Helpline (at 1-888-988-FACT), holds free trainings throughout the state, offers a free parent mentoring service (FACT Parent 2 Parent). CLICK HERE to subscribe to their e-newsletter for information about their programs and events.
FACT’s IEP Training is now available online! “Understanding the IEP: Development, Process and Your Critically Important Role on the Team.” This online training covers important concepts including: the purpose of the IDEA; common definitions; reviewing the IEP page by page; your involvement as a parent; and fostering communication with your child’s IEP team. To watch, click here.
OrFIRST
A non-profit organization to help parents of children with disabilities through training, referrals, information and resources. Serving parents at Title I schools and historically underserved communities in the Portland metro area. Phone: (503) 232-0302.
Oregon Department of Education
Works to make sure that every Oregon public school student has equal access to high quality educational services. (Information on identifying a child who needs special education services and obtaining special education services).
Oregon School Boards Association
Links to Education Service Districts in Oregon
Special Education PTA of Portland (SEPTAP)
A district wide Special Education PTA working in partnership with local school based PTAs. They hold bi- monthly meetings, special events, and have an online forum giving members the chance to connect with each other, their school district, and resources in the community.
Transition Community Network (TCN)
The Transition Community Network site was created to provide a “one-stop shop” for resources related to transitioning youth with disabilities to adulthood in Oregon. This site has links to resources for students, families, teachers, administrators, and supporting agencies to create opportunities for the students to achieve successful futures. Some of those links include directories for local services, inclusion resources, IEP resources and resources from the Oregon Department of Education
Wrightslaw
Wrightslaw is best known source for information about special education law and advocacy. This is a for-profit company.
Government Resources – State:
Department of Human Services (DHS)
Oregon’s principal agency for helping Oregonians achieve wellbeing and independence through opportunities that protect, empower, respect choice and preserve dignity, especially for those who are least able to help themselves.
- Supports for Adults with Developmental Disabilities
Includes Individual Support Plans and Brokerage Support Services. - Support for Children with Developmental Disabilities
The first step in locating services for your child and family is your finding your local Community Developmental Disabilities Program, Click on your county for contact information.
2011 Tax Exemption for Parents of Children with Disabilities
Describes basic information about the 2011 tax exemption for parents of children with disabilities.
Inclusive Child Care Program (971-673-2286)
Provides financial help with the increased cost of child care due to a child’s special needs. Income limits apply. Even if not eligible by income, they can also help in finding childcare providers for children with special needs.
Life Span Respite Care
Respite care information for families provided by the State of Oregon.
Oregon Commission on Autism Spectrum Disorder (OCASD)
Located in Salem, with members appointed by the Governor, the Commission’s mission is to “develop appropriate, collaborative and timely supports and services across the lifespan.”
Oregon Council on Developmental Disabilities
Oregon Department of Education
Works to make sure that every Oregon public school student has equal access to high quality educational services. (Information on identifying a child who needs special education services and obtaining special education services).
Oregon School Boards Association
Links to Education Service Districts in Oregon
Government Resources – Federal [Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI)]:
Oregon Department of Human Services (DHS) Disability Resources
Learn about qualifying and applying for Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI). These programs are governed by the federal Social Security Administration (SSA).
Oregon State Bar
Information sheet on SSI
Social Security – Benefits Eligibility Screening Tool
Provided by Social Security Administration, the Benefit Eligibility Screening Tool (BEST) helps you find out if you could get benefits that Social Security administers. It is NOT an application.
Social Security Disability & SSI Disability Claims
Helps readers understand eligibility and process.
Social Security Disability Resource Center
Explains how the disability process works.
Benefits & Entitlement Specialist Team (BEST) (no website)
Based in Portland. Provides FREE representation to individuals with disabilities, particularly those experiencing homelessness or risk of and poverty, in filing claims for Social Security benefits. However, their services must be obtained through a referral from a community partner, such as DHS.
Government Resources – Military:
Operation Autism
An on-line resource that offers A Resource Guide for Military Families.
Housing:
Home Forward (formerly Housing Authority of Portland), Disability Program
Develops and manages a range of affordable housing options. Serves all of Multnomah County, including the cities of Portland and Gresham. 1221 SW 4th Avenue, Suite 110, Portland, OR97204; Phone: 503-823-2036 email: Nikole.Cheron@portlandoregon.gov
Mortgageloan.com (Housing & Mortgages for People with Disabilities)
A guide for individuals living with disabilities, and their family members, in the process of buying a home of their own. Learn about important steps in buying a home and about financial assistance programs that are available for people with disabilities who want to buy a home.
Jobs:
Career Fit
CareerFit is a two-part workshop series open to everyone looking to better develop their job search skills. Community experts and NWFS staff cover topics including writing an effective cover letter and resume, how to conduct a job search, and proper interviewing techniques. (503)546-6377 www.lastingrelationships.org
Programs for people with disabilites
PIEPDX
One mother’s chronicle of helping her ASD son on the road to employment.
Legal Assistance:
Disability Help Inc.
Based out of Texas, but works on cases throughout the United States providing non-attorney representation to assist individuals as they work through the complex application process for Supplemental Security Income (SSI) and/or Social Security disability benefits.
Disability Rights Oregon (DRO)
Assists individuals faced with legal problems directly related to their disability. Has staff in Portland, Ashland, and Salem.
Safety:
Dennis Debbaudt’s Autism Risk Management
Provides autism training and resources for law enforcement, emergency first responders, parents, educators, care providers, and the autism community. Has a FREE Autism Emergency Contact Form that can be filled out prior to an emergency.
I.C.E Bands Northwest
Located in Beaverton, sells personalized silicone wristbands “in case of an emergency.”
National Autism Association’s Autism Safety Site: for comprehensive information about Wandering, Restraint & Seclusion, Bullying and Suicide Prevention. The “Big Red Box” with helpful items to prevent wandering is available for purchase.
Project Lifesaver International
A voluntary program, currently limited to Deschutes, Lane, Washington and Yamhill counties, plus the City of Lake Oswego, in Oregon. In Clark and Cowlitz counties in SW Washington. Children or adults enrolled in Project Lifesaver wear a small personal transmitter around the wrist or ankle that emits an individualized tracking signal. If that person is reported missing, a trained emergency team responds to the wanderer’s area. There is an initial cost plus a monthly fee, but contact your sheriff’s office about fee waivers.
Washington County’s Help Me Home Program: Voluntary enrollment program for adults or children with a disability who may become lost. An identification photo and pertinent information is placed in a database accessible to patrol officers. All information is kept confidential. Photo and $20 fee required for 2 year registration. For more information, contact Marcia Langer at 503-846-6048 or click here to email.
Outside of Washington county, click here for information about contacting your local police department to register a child or adult with a disability.
Technology Information and Assistance:
Access Technologies, Inc. (ATI)
Located in Salem, specializes in Ergonomics and Assistive Technology.
Oregon Department of Education, Oregon Technology Access Program (OTAP)
Funded by a grant by the Oregon Department of Education to assist school districts in meeting the needs of students with disabilities who could benefit from assisted technology.
Oregon Technical Assistance Corporation (OTAC)
Located in Salem, involved in projects and initiatives in Oregon for individuals with disabilities and their families.
Transportation
TriMet Honored Citizen ID card
Entitles bearer to (1) reduced fares valid in all zones; (2) priority seating; and (3) a personal attendant rides free (if you qualify).
For Children:
The So Cool Center, Inc.
Runs a Comic Book Social Group for children ages 9-12, led by a speech language pathologist. The group is held in NE Portland.
For Teens/Adults:
A Piece of the Puzzle
A social community website for individuals with disabilities. The website has a social wall, a chat area and a game room with over 200 games.
Autistic Self Advocacy Network-PDX
A group that is ONLY for persons on the autistic spectrum who are 18+ and are either medically or self-diagnosed. They bring together young adults and adults who are on the autistic spectrum to share ideas, to give advice and support, and to create a learning environment for self advocacy.
Autism After 16
Provides information and analysis of issues primarily affecting people on the autism spectrum ages 16 and older, including transition out of high school, college, employment, housing and social relationships.
The Daniel Jordan Fiddle Foundation for Adult Autism
A national organization focused on adults living with Autism Spectrum Disorders (ASD.) It is a volunteer-run organization whose mission is to develop and fund
The Daniel Jordan Fiddle Foundation Signature Programs that address critical needs and gaps in services and supports for adults living with ASD.
Emerging Leaders Northwest (ELNW)
Organized through the Oregon Health Sciences University and the University Center for Excellence on Developmental Disabilities ELNW are leaders ages 13-30 with disabilities who provide support to other young people with disabilities through community, web-based information and guidance. They offer workshops, trainings, mentorships, internships, and an interactive website. There is also an Emerging Leaders chapter in Salem.
Project Grow
For adults with disabilities to participate in community around farming and art.
Resources Connection of Oregon (RCO)
Located in Salem, serves adults (18 years and older) with developmental disabilities.
WrongPlanet.net
A web community designed for individuals (and parents / professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences. They provide a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and a chatroom for real-time communication with other Aspies.
For College Students:
Autistic Self Advocacy Network-PDX
A group that is ONLY for persons on the autistic spectrum who are 18+ and are either medically or self-diagnosed. They bring together young adults and adults who are on the autistic spectrum to share ideas, to give advice and support, and to create a learning environment for self advocacy.
Autism After 16
Provides information and analysis of issues primarily affecting people on the autism spectrum ages 16 and older, including transition out of high school, college, employment, housing and social relationships.
Emerging Leaders Northwest (ELNW)
Organized through the Oregon Health Sciences University and the University Center for Excellence on Developmental Disabilities ELNW are leaders ages 13-30 with disabilities who provide support to other young people with disabilities through community, web-based information and guidance. They offer workshops, trainings, mentorships, internships, and an interactive website. There is also an Emerging Leaders chapter in Salem.
Financial Aid for Disabled Students
A listing of numerous scholarship options for students with disabilities that range from national financial aid opportunities to local opportunities within the United States and Canada. Each scholarship profile indicates whether online programs at accredited colleges or universities are eligible for the award.
We Connect Now
Developed in an effort to connect and integrate college students with disabilities in a virtual community with a voice on important issues.
WrongPlanet.net
A web community designed for individuals (and parents / professionals of those) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences. They provide a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and a chatroom for real-time communication with other Aspies.
For Parents:
Advocates of Children That have Special Needs (A.C.T.S.N., )
Pronounced “action”, A.C.T.S.N. is a support group located in Wilsonville for parents and caregivers that have a child with special needs including autism. A.C.T.S.N. offers information, assistance, and support through monthly group meetings, formal trainings, and spokespeople.
Easter Seals – R&R (Respite care in Salem & Medford)
The Recreation & Respite (R&R) program for parents of children ages 3-18 (including siblings). Experienced staff and volunteers provide dinner or a snack and any necessary physical care while parents/caregivers take a much deserved break. R&R (formerly Parents Night Out) is currently offered in Medford on Friday evenings and/or Saturdays. Medford area only -“In-service R&R Days.” The Medford program will provide care on Medford Schools “In-service Days,” designed like their “Saturday Recreation & Respite (R&R) Program.”
Families for Community (FFC)
Located in Medford, helps to support parents that have a child experiencing disability. They have six ways to get connected: a blog, events, Facebook, an online community support group, one for GFCF members, and parent support groups. They provide mentoring parent partners, and hold trainings and workshops.
Helping Children with Autism
Autism Treatment Strategies and Parenting Tips
Parent to Parent of Oregon (P2P of Oregon)
Recruits and trains parent mentors that have experience with disability, and matches those mentors with parents in need of support. P2P of Oregon is the state chapter of Parent to Parent USA and affiliated with FACT Oregon.
Southern Oregon Developmental Disabilities Group for Parents
An online forum for parents of children affected by Autism, PDD, Asperger’s, ADHD/ADD, Fragile X Syndrome and all other Developmental Delays.
Special Education PTA of Portland (SEPTAP)
A district wide Special Education PTA working in partnership with local school based PTAs. They hold bi- monthly meetings, special events, and have an online forum giving members the chance to connect with each other, their school district, and resources in the community.
Teen Autism
A blog started by Tanya Savko, parent of an autistic teen and author of the novel “Slip”. The Blog is for parents of teens with autism.
Wise Old Sayings: Communicating with an Autistic Child – A Parent’s Guide
Communicating with an autistic child has very few “one size fits all” solutions and, in many cases, it will take a lot of trial and error and patience in order to find successful strategies for communicating.
WrongPlanet.net
A web community designed for individuals (and parents/professionals) with Autism, Asperger’s Syndrome, ADHD, PDDs, and other neurological differences. They provide a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and a chatroom for real-time communication with other Aspies.
Other: Books / Art
The Girl Who Spoke in Pictures
Understanding Death and Illness and What They Teach about Life: An Interactive Guide for Individuals with Autism or Asperger’s and their Loved Ones
Other: Articles
Why Inclusion Begins in Kindergarten…Or Doesn’t – A short article by Charlene Comstock-Galagan on the urgency of inclusive kindergarten placements.
Classroom Inclusion Tips and Resources – A great two-pager on how and why to promote inclusion
Wrightslaw – A special education law and advocacy repository for parents, educators, advocates, and attorneys; accurate, reliable information about special education law, education law, and advocacy for children with disabilities
Disability is Natural – is a great source of articles, blog posts and information about new ways of thinking about developmental disability, inclusive education and Kathie Snow’s People First Language
Positive Behavior Supports – www.pbis.org; www.modelprogram.com; www.pbisaz.org – a few great sites that focus on Positive Behavior Supports
Keeping Your Autistic Kids Safe: A Family Resource Guide
http://safesoundfamily.com/p/autism-safety/
Parent’s Guide to Toilet Training Children with Autism Spectrum
http://www.autismspeaks.org/science/resources-programs/autism-treatment-network/atn-air-p-toilet-training
Source: www.autism-society.org