Kids with autism do best when they know what’s coming. Explain what they can expect, using social stories, pictures or any method that works for them.
How do I prepare my relatives for my child?
Be sure your relatives are ready for your child. Do they know what foods he prefers? Are they aware of and okay with any special needs, behaviors, etc.? For relatives who don’t understand autism or don’t see your child often, talk beforehand about some of the odder behaviors your child may exhibit. This prevents them from being alarmed or taken aback in the middle of the festivities.
What happens if my child has a meltdown at the family gathering?
Have a plan B. If your child is likely to meltdown, or can only handle a couple of minutes at the table, think of ways you will cope. Some options: bring along favorite videos and toys; assign one parent the job of taking your child outside to calm down; or bring two cars “just in case.” Have a quiet room set aside where the person can go to be by herself. If you are not home and that’s not possible, be prepared to leave whenever necessary to avoid overload. If possible, come in separate cars so the whole family doesn’t have to leave.
Should I bring separate food to the family gathering?
Yes, if possible have alternate foods and snacks available. If the meal will be at a different time then you usually eat, consider feeding the child in advance to maintain their routine and/or having activities they enjoy to do instead of eating.
Consider your child’s sensory responses. For example, do they have an aversion to the lights? If so, do not use lights and instead add ribbons, paper chains and other festive touches. Do you have glass ornaments and is your child safe with these? If not, consider only plastic ornaments. Count down when the gifts will be opened, “Ten days until we open gifts!” Have a calendar to mark off or other visual representation of the passing of the days.
The K-Plan is intended to provide supports in the home and community for the qualifying person (child or adult) based on their actual needs, as determined by a Needs Assessment. The person has to qualify for OHP but the county is looking at the person’s income not the families, so almost everyone will qualify. (If the child or adult has separate income, talk to an attorney about different types of trust to help).
How do I access the K Plan?
To access K-Plan or any other county services, contact your local County Developmental Disability Services Program. FAMILY INCOME ISN’T CONSIDERED, so help is available regardless of family income! The application takes 90 days to process, so get started as soon as possible. Here’s the link to the DD Services for each county:http://www.oregon.gov/dhs/DD/pages/county_programs.aspx
Here’s the link for more info about services for children, services for adults (over age 18), and application forms in several different languages:http://www.oregon.gov/dhs/dd/pages/eligibility/home.aspx
I already have DD services in place can I still get the K-Plan?
Once the person is approved for DD Services, talk to your case worker about the benefits available under the K Plan vs. Family Support plans. Most families benefit more from the K Plan but it’s going to depend on the family situation. If your caseworker isn’t knowledgeable, talk to their supervisor. K Plan is new and there’s still a lot of confusion.
How does one get approved for the K-Plan?
An issue under the K Plan is how to make sure the assessment is an accurate representation of the person’s need. This is NOT the time to trumpet the person’s abilities, unfortunately, as the assessment is based on their deficits. The caseworker will need to meet the person being assessed at some point, but that only takes a few minutes. Otherwise, I very, very strongly suggest that the person NOT be present for the assessment. They don’t need to hear all about what they can’t do.
How do I find out more about the K-Plan?
Another issue is that once approved for services under the K Plan is that the family hires the care provider (Personal Support Worker or PSW) although the county pays them. For most people, recruiting, hiring and training PSWs is something they haven’t done and is a huge task. The caseworker can help, but they may not have great resources.
I have OHP how do I access ABA?
- Get a referral (prescription) from your doctor:
- IF NO DIAGNOSIS:
- Go to a doctor or psychologist experienced in diagnosis or treatment of autism for an evaluation for autism spectrum disorder.
- If you / your child gets a diagnosis, ask the diagnosing doctor if ABA treatment is medically appropriate.
- If so, ask the doctor to provide a referral (a prescription) to an ABA provider that states that ABA treatment is medically appropriate AND that less intensive treatments have been considered (not necessarily tried).
- IF ALREADY HAVE AN ASD DIAGNOSIS:
- Go to a doctor who is “experienced in diagnosis or treatment of autism” for a referral. This is ideally the doctor who provided the diagnosis, or a developmental pediatrician, or a psychologist, or a pediatric neurologist who treats autism. However, it can be any doctor because any doctor is able to diagnose and treat autism.
- Ask the doctor for a provide a referral (prescription) to an ABA provider that states that ABA treatment is medically appropriate AND that less intensive treatments have been considered (not necessarily tried).
- Take your referral/prescription to an ABA provider of your choice
- The ABA provider completes an assessment and treatment plan to be approved by OHP.
- Treatment begins
- Treatment is reviewed every 6 months for reasonable progress towards stated goals.
The best thing you can do for your child is to really learn all about her. Don’t worry about learning all about autism because (a) there’s just too much info and (b) most of it won’t apply since everyone on the autism spectrum is different.
My best advice is to observe your child closely to figure out how she responds to the world. What calms her down, what does she enjoys and what triggers her? How does she react when over-stimulated, what clues does she give that a meltdown is coming? How does she learn best? It’s much easier for your child and everyone else around her to try to shape her world so that she can be happy and functional than to try to force her to adapt to the world around her. It’s not what she “should” be able to do, but what she actually can do.
My son has an I.E.P. what should I do?
I hope school is going well. But, it’s worth the time to get some training on the special education system since the law anticipates that parents will be an integral part of the IEP process. Also, next year’s teachers might not be as great. You don’t want to be the only one at the IEP meeting that doesn’t know what’s going on. Teachers are often wonderful, but the parent is the only one at the table whose sole concern is the child. Teachers have to think about every child in the classroom and administrators have to think about the budget. FACT Oregon offers free trainings state-wide, including by webinar and have “warm line” for questions. Their website is www.FACTOregon.org.
What are DD services?
DD Services – are available through each county and aren’t limited by family income. Depending on your child’s needs, they can provide funding for respite and community services, plus behavioral consults and some training funds. It will take 90 days to get approved and there will be an adaptive assessment. Even if you don’t think you need services now, it’s a good idea to get the process started and be in the system if you do need services later. Here’s the link: http://www.oregon.gov/DHS/SENIORS-DISABILITIES/DD/Pages/children-supports.aspx. DD Services can also help you apply for SSI benefits. Unlike DD Services, SSI is only available if your family meets certain income limits, currently $1,800/month income and less than $3,000 in assets not including your home and car ($2,000 if a single parent).
What type of therapies should they be in?
Therapies – There are lots of therapies out there, ranging from Speech to Occupational Therapy to Physical Therapy to Behavioral Therapy to Biomedical (diet and supplements) to Vision Therapy to Horse Therapy and so on. Talk to your medical providers and observe your child to determine what would be useful. Everyone is different so what worked for one person might be inappropriate for your child.
My advice is to do one therapy at a time for a period of 90 day (unless it turns dangerous) and take detailed notes to determine if it’s helping. Trying more than one at a time means you don’t know which one was effective. Talk to your insurer about coverage for different therapies. Generally, Speech, OT, PT, ABA (Behavioral) will be covered. Naturopaths are covered as primary care docs in Oregon too. We have lists of these providers on our website at: http://autismsocietyoregon.org/resources/professional-directory/. See the list of categories on the left-hand side.
What are the next steps after diagnosis?
On the ASO website, we have an “Autism Action Plan.” Link: http://autismsocietyoregon.org/newly-diagnosed/autism-action-plan/. Since you already have a diagnosis, start with #3. These are suggestions only, not a check list! You don’t have to do all of these things. Sometimes the best thing is just to wait for your child’s development to occur at its own pace. Just look them over and filter through your family’s experience and values.
There’s also a link to the 100-day kit from Autism Speaks on our website at: http://autismsocietyoregon.org/newly-diagnosed/100-day-kit/. Again, it can be overwhelming so do what makes sense to you and ignore the rest.
Are there support groups for parents and caretakers?
Check out the support group listings on the ASO website. We provide listings of the groups we sponsor and everything we know about in the region. Talking to other parents is a great way to find out information, feel less isolated and meet some wonderful people. Here’s the link to the support groups by region: http://autismsocietyoregon.org/support/support-groups-region/.
How do I register my child with 911?
You can consider registering your child with the local first responders if there are concerns about bolting/wandering, or how the child would react in an emergency. For example, if your child is verbal, is she likely to lose speech if stressed? Or to run away from a first responder she doesn’t know? or get violent? Here’s the link with 911 registration info: http://autismsocietyoregon.org/newly-diagnosed/register-with-911/. Much is available in Washington county, if you live there. Some counties have Project Lifesaver if you have a child who is a runner.
Coming to terms with diagnosis
Last, but by no means least, take care of yourself. Give yourself some time to come to terms with the idea that your child may be developing differently than you expected. It’s perfectly reasonable to be upset by that fact and to mourn, in some fashion, the life you expected. Just NEVER in front of the child. Support groups are great for this, by the way. Nothing is linear, so there will be good days and bad days. But, she’s still the same child and different isn’t worse, just different.
Feel free to call or email ASO with any questions:or info@AutismSocietyOregon.org
SSI (Supplemental Security Income) is a federal program available to children with a disability. Approval is based on having a disability and stringent income and asset limits. If the child is under age 18, they look at the family’s income and assets. The limits are about $1,800/month in income from all sources and $2,000 (single) -$3,000 (married) in total assets, not including house and car.
What happens if I get denied services?
Even if you meet the income requirements, it’s very common to be denied on the first try. There are attorneys who will help *after* the denial (very few will do the initial application because there isn’t a payment mechanism.)
If approved, you receive SSI retroactively. The attorney gets paid a percentage of what you ultimately collect, with the percentage set by law, so you don’t have to pay upfront ever. Here’s a link to attorneys on the ASO website. Look for those that specialize in Social Security. Good rule of thumb is to talk with 3 and decide who you want to work with. There shouldn’t be any charge. http://autismsocietyoregon.org/resources/professional-directory/attorneys/
How much a month will I get?
SSI provides about $770 per month in income for the child with a disability, although that depends on various circumstances. [Link to SSI]
Are there income restrictions to get DD services?
You do NOT have to apply for SSI to get services. DHS / DD Services or Developmental Disability Services are implemented through each county. There is NO INCOME restriction to getting services and NO IQ limit. But, they conduct an Adaptive Assessment to see if the child qualifies. Contact your local DD Services office at: http://www.oregon.gov/DHS/SENIORS-DISABILITIES/DD/Pages/county-programs.aspx. The approval process takes 90 days after the application is submitted.
I am approved for DD services now what?
Once approved for DD Services, the child has to qualify for Medicaid in Oregon (called “OHP”) to participate in the K Plan, which provides respite, behavioral, assistive tech, and other services. A child qualifies for OHP, regardless of disability, if the family income is less than 300% of the federal poverty level. This is a much more generous standard than SSI. It’s about $46,600 a year for a family of two or $82,000 a year for a family of five. To apply for OHP, which can be done at any time, see: http://www.oregon.gov/oha/healthplan/pages/apply.aspx
Once approved for DD services does that mean I will be approved for SSI?
Even if your child doesn’t qualify for OHP under this standard (ie, your family makes too much money), DD Services will qualify the child under a special waiver that looks at the child’s income *only*. Nearly every child who qualifies for DD Services will qualify for the waiver. However, this does NOT qualify a child for SSI. The family income limits still have to be met and SSI applied for separately.
Cheapest and easiest: Install door and window alarms so the parents are notified if the door or window is opened in the middle of the night. A pair of 2 window or door alarms can be purchased for $13.00 from the National Autism Association (NAA), or there may be less expensive ones may be available on Amazon or Walmart/Target/Kmart. If the child won’t remove them, simple bells can even be put on door knobs. This won’t keep a child in the house, but gives the family warning that the child is wandering. If you have DD Services, they may be able to help with the cost.
A variety of items can be purchased from the NAA website shop at: http://nationalautismassociation.org/store/#!/~/category/id=2416355&inview=product13909815&offset=0&sort=normal), in addition to the door and window alarms, including “STOP” visual aids for doors and windows, shoe ID tags, and safety alert cards. The Big Red Safety Box combines several of these items. It is available for free with a waiver or a $35 donation: (http://nationalautismassociation.org/store/#!/~/product/category=2416355&id=13909815
What about deadbolt locks?
Deadbolt locks will help to keep a child in, but no matter how high up it is, assume the child will get to it. More likely to keep the child in, but raising other concerns such as fire safety, are deadbolt locks doors that require a key from the inside to use. If used and ASO does not take a position advocating their use, the key should be with the parents at night because any hiding place will be found by the child and no place is high enough to be truly out of reach for a child who can climb. Also, give copies of the key to other household members to have with them at night, install extra smoke detectors and make sure all are operational, and practice fire safety drills.
Is there anything else that I could do?
Fence and other home safety modifications. If you have DD Services, they can help with home modification costs, but plan that it will take time and a lot of documentation to get approval.
Autism Assistance Dogs. There are several providers (see our Professional Resource Directory at (http://autismsocietyoregon.org/resources/professional-directory/) and most are well over $10,000. They have fundraising tips. Another avenue to train a dog as a companion, but please research carefully the type of dog to make sure it is appropriate.
Behavioral Therapies. Some children are eloping for a specific reason, so determining that reason and finding another way to meet that need can reduce the wandering behavior. Behavioral supports are available through DD Services (up to 27 hours per year) and there may be a wait list. Behavioral therapies such as ABA (“Applied Behavioral Analysis”) are covered by OHP and by private insurance. [Note: if you have insurance through a self-insured employer, they may or may not cover autism therapies. Check with your HR Department.
Is there anything I can do in the event they do get out?
Because a determined child with ASD can get out of Ft. Knox, plan ahead by introducing the child to all of the neighbors and explaining the situation in case the child shows up unexpectedly at their house. Similarly, considering registering the child with 911. See the link on the ASO website at: http://autismsocietyoregon.org/newly-diagnosed/register-with-911/
Are there resources available for those who elope?
The National Autism Association (NAA) at www.NationalAutismAssociation.org has an enormous amount of information on wandering and protecting kids. In particular, there is:
- About Wandering and Elopement at: http://www.autismsafety.org/wandering.php
- 12 Ways to Prevent, and Respond to, ASD Wandering at: http://www.autismsafety.org/prevention.php
- Caregiver Checklist tool at http://nationalautismassociation.org/wp-content/uploads/2012/08/NAA_CAREGIVER_CHECKLIST.pdf.
- Downloadable Big Red Safety kit with all sorts of forms and information for parents at: http://nationalautismassociation.org/docs/BigRedSafetyToolkit.pdf
- Downloadable Big Red Safety kit for First Responders
- “Plan Your Response to an Autism Emergency”: http://www.pathfindersforautism.org/articles/view/plan-your-response-to-an-autism-emergency
- Autism on Scene Response Cards: http://www.debbaudtlegacy.com/autism_on_scene_response_cards.cfm
- Autism Emergency Contact Form: http://www.autismriskmanagement.com/documents/autism_emergency_contact_form.pdf
- A calm parent can help a child stay calm
- A visual schedule can help
- Back to school isn’t just the first day. Days off are disruptive to the routine! Mark down school holidays on a calendar where the child can see it. Often, it’s not the change to routine that’s so difficult, but the unexpected change. And, sometimes it’s just the change.
- Give your child a break.
- Help your child’s teachers by creating a 1 page profile
The passes are similar to the Disney “FastPass”. EXCEPT… there are kiosk stations throughout the park, (I think 5 total in Disneyland and 2 in California Adventure). You must go to the kiosk station BEFORE you go to the rides/attraction you want to do. There a guest service person will ask what attraction you want to do, how many in your party, etc. They scan the pass card that you are given at City Hall. EVERYONE IN YOUR GROUP MUST HAVE THIS PASS WITH THEM in order to utilize the program. We put our passes in a laminated pouch/laynard around our necks. If the person is sensory-sensitive, a care taker can hold their pass for them but all passes are required to be scanned and shown at the kiosk stations and at each one of the attractions.
How do the passes work?
At the kiosk station you tell them which attraction you want to do, then they scan your pass and tell you the time to be at the attraction. You can only schedule one attraction at a time. But Guest Service will give the best time options for most popular attractions.
For example: we went to the kiosk station to do Space Mountain. They scanned our passes and told us to be at Space Mountain at 10:05. Usually our wait time was just enough time for us to walk to that attraction. Popular attractions such as Cars Land may have a little longer wait time. But, that frees you to do other things to keep you occupied until your scheduled time for that attraction.
Once at the attraction you enter either through the “FastPass” line or some the attractions you enter through the “Exit”. (A Disney guest relations person will direct you.) They scan your pass. You enjoy attraction
NOTE: You must have your pass with you, and it HAS to be scanned when you arrive
What is the process like to getting a pass?
Disney DOES NOT require documentation of person’s special needs. (However, it is helpful to have. I had our doctor write a brief letter with our diagnosis). Again not required BUT helpful.
OHP is open to any child in Oregon whose family earns less than 300% of the poverty level. If they qualified for SSI, then they easily meet this income limit. (Even if a child doesn’t qualify for OHP due to family income, the child can still get a waiver to qualify for DD Services’ K Plan).
To apply for OHP, which has enrollment year round, see http://www.oregon.gov/oha/healthplan/Pages/index.aspx. It takes 45 days to process the OHP application.
ASO and several allies worked very hard to get insurance coverage of ABA (Applied Behavior Analysis) and other autism therapies. ABA is now covered without any age, dollar or visit limits under both private insurance and OHP. Also covered are speech therapy, occupational therapy and physical therapy, if the child needs them.
OHP services are provided in Oregon through Care Coordinating Organization (CCOs). There are 2 in the Portland area: Family Care and Health Share. At this time, Health Share is making it very difficult for families to obtain ABA therapy so I’d advise not choosing them. Once you are enrolled with a CCO, you’ll need to get referrals from your pediatrician or other doctor with experience or knowledge of autism, for ABA, speech, OT and/or PT. We can help you with this process.
What time of services do they have at school?
School Services: Under age 5, children are in Educational Service Districts (ESDs) under the Early Intervention Program. Some ESDs are great, some aren’t. But the common problem is that they don’t provide enough hours, anywhere from 4 – 12 hours per week, depending on assessed need. Once a child turns 5, they receive Special Ed services through your local school district.
A current IEP (called an IFSP in Oregon until age 5) will transfer to Oregon. The school will do an updated IFSP/IEP usually after the child has been in their services for 6-8 weeks so they get a chance to know him. The IFSP/IEP from out of state is supposed to be implemented until they redo it, but they can’t provide services they don’t have.
Under the IDEA, the federal law that regulates special education, the child has to be placed in the “least restrictive environment” in which the child can learn. There are a wide variety of classrooms available depending on the child’s needs, ranging from (least restrictive) general ed classes with some “push-in” or “pull-out” services, to self-contained classrooms within select schools to placements in schools specifically for children with special needs (most restrictive).
For a list of the ESD’s in Oregon by city and county, see: http://www.osba.org/Links/LeftNav/Education%20Institutions/Education%20service%20districts.aspx
For free help navigating the special education system, contact FACT at www.FACTOregon.org. They have free trainings, including by webinar.or go to
How long are Special Education Services in place?
If the child does not receive a standard high school diploma, the child is eligible for special education services until age 21. Otherwise, school services cut off at high school graduation. There are Disability Service offices at every college, but the student has to disclose the disability and request accommodations themselves.
What School is best for them?
Determining which school is best for your child is going to depend on the child’s needs which vary widely by individual, the needs of the other family members and the family’s values. What’s available is going to vary by school district, by school and even by teacher. My best advice is to figure out what type of school and community you are looking for (e.g., is inclusion an important value, or do you prefer a self-contained classroom? do you prefer to urban, suburban or rural? how much of a commute is practical? what areas are financially realistic? how important is climate – Oregon is rainy in the western 1/3 but high desert in the eastern 2/3? etc.). Then, talk with other parents in the area to narrow down areas. If at all possible, I highly recommend coming out and talking to the top contenders to get a feel for the place and how they react to your child.
Supports. We highly recommend talking with local families to learn about local resources, family events and to meet people. ASO has volunteer chapter reps in locations throughout Oregon who would be happy to talk with you. We also sponsor support groups and keep a list on-line of all the support groups (both those we sponsor and all we know about) in each region of Oregon. The chapter reps and support groups are listed on the ASO website by region at: http://autismsocietyoregon.org/support/support-groups-region/.
- Calendar of Events – covering all events of interest throughout Oregon and SW Washington, including workshops and special events hosted by ASO, (http://autismsocietyoregon.org/news-and-events/events/)
- Support Groups – separated into 8 region across Oregon. We list the groups we sponsor and then everything we know about in that region. Also listed are our Chapter Reps for each region who can provide local information (http://autismsocietyoregon.org/support/support-groups-region/)
- Professional and Community Resource Directory – state-wide listings in over 40
categories ranging from ABA therapy to Vision therapy and including Dentists, Haircuts, Summer Camps and more. (http://autismsocietyoregon.org/resources/professional-directory/)
- Take a Break on ASO – a very popular program providing an evening out to parents/primary caregivers of a person on spectrum (http://autismsocietyoregon.org/support/take-break-aso/)
The following are some book recommendations.
Everyone Dies One Day: Assisting people with an Autism Spectrum Disorder to understand the concept of death, loss and the grieving process
by Kathleen O’Brien
Reading Level: young children & all ages with an ASD Produced by Autism Association of Western Australia (Inc.) www.autism.org.au The unique characteristics and learning style of people with an Autism Spectrum Disorder, can cause problems in their understanding of bereavement and in how they
their loss and grief. This booklet is an aid in supporting people with an ASD through their experiences in an understanding, concrete and ongoing way.
Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum
by Karla Helbert
Reading level: 6 years and up
Published by Jessica Kingsley Publishers (2012) ISBN: 1849059225
This book explains death in concrete terms that a child with autism will understand, explores feelings that the child may encounters a part of bereavement and offers creative and expressive activities that facilitate healing.
With the start of the “K Plan” in mid-2013, Developmental Disability Services in each county can now provide personal care worker hours for children based on the child’s needs as determined by the Child Needs Assessment.
How has respite services changed?
Under the new K Plan, the families are responsible for hiring the personal support workers (PSW), but the workers are paid by the state. Payment is currently $14 per hour.
Where can I find more information on respite services?
There is a lot of good information from the State of Oregon website at: “Life Span Respite” http://www.oregon.gov/dhs/respite/pages/families/what_to_look_pvdr.aspx#second
Am I responsible for employment taxes for the personal support worker?
NO. The Oregon Home Care Commission (OHCC) is the “employer of record” for personal support workers, As the employer of record, the OHCC is responsible for worker’s benefits for families/consumers
At the age of 18 your young adult with a disability (or you) will transition into adult services.
They are not receiving a full day of school through transition service, what can I do?
Here is a link to the DRO website about people ages 18-21 not receiving a full day of school through transition services. DRO, a publicly funded watch dog group, wants to hear from you if this is the case: Parents of Special Education Students Ages 18—21: Is Your Child Receiving Less Than a Full School Day of Services?
http://www.disabilityrightsoregon.org/news/parents-of-special-education- students-ages-18201421-is-your-child-receiving-less-than-a-full-school-day- of-services
What can I do to prepare for applying for services?
This is a time when you will want to organize all your young adultʼs records in advance, including both educational and medical evaluations, testing,work samples and past IEP documents.
You will want to contact your child’s county developmental disabilities case manager well in advance of your child’s 18th birthday to check in and ask about the timelines the county goes by to determine adult eligibility. If you do not hear from your case manager, be proactive and contact them. Delays in determining adult eligibility can mean gaps in services. If your child is under 18 and not currently connected with the county developmental disability office you will want to contact them now and get the process started.
How can I get a better understanding of what this process looks like?
To help understand the whole process there is an excellent publication called the Roadmap to Support Services in Oregon. You will be given this at some point in the process, but you can download it here from DROʼs website: http:// www.disabilityrightsoregon.org/resources/5-publications-1/developmental- disabilities-services/a-roadmap-to-support-services-2nd-edition/view.
What are some of the transitions that we should expect?
Some of the big transitions you will face are:
- Determining eligibility for adult services through the state/county
- Transition into county DD case management or the brokerage system
- Applying for SSI
- If eligible for SSI, your child will also be eligible for health care (including
mental health services) through the Medicaid system. In Oregon that is through the
Oregon Health Plan. You need to apply for Medicaid separately as soon as you turn 18
- Making a decision about guardianship and estate planning (special needs
trusts) for your young adult.
- Determining eligibility for adult services through the state/county
What kind of testing will be done to determine eligibility?
You may be asked to complete some type of adaptive functioning testing for your child during the eligibility process. Typically the parent or care provider completes a rating of ability to function in multiple settings using different skills. It is important to remember when you are completing this that if your child needs any prompts or supervision to complete these tasks they are not able to complete them independently. Just imagine your child living alone with no supports and their ability to function using these skills when answering these questions. This is not the time to brag about your child’s accomplishments even though you may be very proud of them and you both have worked hard to help them accomplish life skills.
There have instances where parents have mistakenly rated their child too high on these tasks and they have been told they were not eligible for adult services. Please ask as many questions of your child’s case manager or the tester when completing this testing so you understand how to complete it accurately. If you have any recent evaluations/ testing the school has completed that you agree reflect your child’s abilities you can submit those also, including IQ/cognitive testing. The county may refer you to a provider for evaluation at no cost including some of the above testing. You may also elect to be evaluated by a provider of your choice at your own cost and submit the results to the county case manager.
Who chooses what services to go to?
When your child receives the adult eligibility through county developmental disability, your county case manager will be the person who gives you information about choosing services from either the county or the brokerage and would help facilitate your child transferring into the state brokerage system. This ideally should be a seamless transition with no gap in benefits for your child. The brokerage will be chosen by the county DD Services unless you choose to remain with the County for case management.
What happens if I want to change providers?
After that if you are not happy with that particular brokerage or services from the county you will be able to request to move to a brokerage, choose another brokerage or another caseworker within the brokerage (if more than one is serving your area). See the list of available brokerages in Oregon. Please note that some brokerages are at full capacity,so you may be placed on a waiting list for that brokerage.
For more information on how and why the brokerages were established in Oregon you can read more about the Staley Agreement here:
Self Directed Support Services for Adults
What else should I know about brokerages?
You need to be receiving Medicaid to receive brokerage services, so it is especially important to apply for both Social Security and Medicaid when you turn age 18 to receive all services available. Please contact your case manager through your county developmental disability agency to make sure everything is being done on their end to facilitate your transfer to the brokerage when your Medicaid application is approved.This article explains the situation in more depth.
Non-Medicaid Customers Dropped from Brokerages October 1st | independence | northwest | blog
Medicaid in Oregon is administered through the Oregon Health Plan. Here is a link with information on how to apply. Oregon DHS: OHP application & benefits, FAQs
Will they be eligible for SSI after 18?
Applying For SSI-Qualifying for SSI is REALLY IMPORTANT in the level of adult services that are provided by the state. First locate the Social Security office that is most convenient for you. Social Security Online – Seattle Region http://www.ssa.gov/seattle/
You can phone in to start the application process at or very close to the 18th birthday. It can take several months to qualify.
*Please note that when your child applies for SSI benefits they will most likely be required to have IQ testing done to qualify if it has not been completed already. If it has not been done it can hold up the qualification process until it is completed and reviewed.
What information do I need to gather before applying?
To apply for SSI you will need copies of medical records, original or certified copy of the birth certificate, any employment and wage information if your child has worked, any investments checking or saving account information. This is where having your records organized can really help!
You can provide your child’s school records, including testing, evaluations, past IEP’s to the Social Security case worker to have them make copies. This can speed up the process a bit since otherwise they need to request the school district to provide copies to them.
Is there a dollar limit on assets they have to be eligible?
**Remember that there is a dollar limit on how much in assets your child can have to still qualify for SSI benefits. At the time of this writing it was $2000, but check with Social Security for the current limit. Carefully examine your child’s assets; including bank accounts and investments well BEFORE they turn 18 to help plan for their transition to adult services. This is very important .Ask other family members if they have any assets placed in your childʼs name well in advance of turning 18. Some things that may be considered assets are: cash, life insurance cash surrender value, stocks, bonds, bank accounts and real property.
What happens if they need help managing their money?
One of the parents/or a community representative can be appointed a Representative Payee, (Rep Payee) giving them responsibility for distributing the SSI money received. This is usually done if the person receiving SSI would have difficulty managing the money. After reviewing the application information, Social Security will make a decision about requiring this. If there is any question about the need for a Rep Payee it helps to fill out the paperwork for it during the initial appointment. A new bank account needs to be established for the automatic monthly deposit of the social security check. The Rep Payee needs to fill out a brief report each year for Social Security showing how the money was spent. SSA Guide For Rep Payees http://www.ssa.gov/pubs/10076.html
Are their any other resources available?
There are free resources for benefit planning for people receiving SSI in Oregon. There are special programs for college students receiving SSI as well as for people who want to work without having their SSI payments reduced. See the links below.
Disability Rights Oregon has free SSI benefit planning services available.
Passage to Independence Program (PIP) Benefits planning and assistance for individuals receiving SSI, SSDI Disability Rights Oregon620 SW Fifth Ave,5th floor Portland,OR 97204-1428 http://www.disabilityrightsoregon.org/need-help
Social Security Work Incentive Programs
You can start the initial application for SSI on line. Social Security Online – The Official Website of the U.S. Social Security Administration http://www.ssa.gov/
How do I get help with Guardianship & Estate Planning?
Making the decision for guardianship is a big decision and is best made after careful consideration. There are several attorneys on the ASO Resource list, http://autismsocietyoregon.org/resources/professional-directory/attorneys/, who handle guardianship cases. There are also attorneys listed that can help with Estate Planning as well as drawing up Special Needs Trusts.
Please keep in mind each county in Oregon has different procedures for legal guardianship so you want to have an attorney who understands the procedures in your county. Disability Rights Oregon and The ARC have very good information on guardianship (see links below)
Guardianship — Disability Rights Oregon
ARC of OR Guardianship Info The GAPS Program: Guardianship, Advocacy & Planning Services http://www.arcoregon.org/gapsbooklet2.htm
ABLE accounts are tax-advantaged savings accounts for individuals with disabilities and their families. ABLE accounts allow individuals with disabilities to save up to $100,000 without the assets counting against their federal and state benefit’s asset limits. ABLE accounts were created as a result of the passage of the national Stephen Beck Jr., Achieving a Better Life Experience Act (ABLE Act) of 2014 and the Oregon Senate Bill 777.
Why the need for ABLE accounts?
Millions of individuals with disabilities and their families depend on a wide variety of public benefits for income, health care and food and housing assistance. Eligibility for these public benefits (SSI, SNAP, Medicaid) require meeting a means or resource test that limits eligibility to individuals who report more than $2,000 in cash savings, retirement funds and other items of significant value. Savings up to $100,000 in ABLE accounts will not affect an individual’s eligibility for SSI, Medicaid and other public benefits.
Am I eligible for an ABLE account?
The ABLE Act limits eligibility to individuals with significant disabilities with an age of onset of disability before the age of 26. If you meet this age criteria and are also receiving benefits already under SSI and/or SSDI, you are automatically eligible to establish an ABLE account. If you are not a recipient of SSI and/or SSDI, but still meet the age of onset disability requirement, you could still be eligible to open an ABLE account if you meet Social Security’s definition and criteria regarding significant functional limitations and receive a letter of certification from a licensed physician. You need not be under the age of 26 to be eligible for an ABLE account.
Are there limits to how much money can be put in an ABLE account?
The total annual contribution by all participating individuals, including family and friends, for a single tax year is $14,000. The amount is tied to the gift tax limit and may be adjusted periodically to account for inflation. The total limit over time that can be deposited in an Oregon ABLE Savings Plan account is currently set at $310,000. The first $100,000 in an ABLE account is exempted from the SSI $2,000 individual resource limit. If and when an ABLE account exceeds $100,000, the beneficiary’s SSI cash benefit would be suspended until such time as the account falls back below $100,000. It is important to note that while the beneficiary’s eligibility for the SSI cash benefit is suspended, this has no effect on their ability to receive or be eligible to receive medical assistance through Medicaid.
Are there tax advantages to ABLE accounts?
Yes. Investment earnings grow tax-deferred and qualified disability expense distributions come out federally tax-free. In addition to federal tax benefits, there are state tax benefits for Oregonians. Contributions to ABLE accounts with beneficiaries under the age of 21 are deductible for Oregon income tax purposes up to annual limits that are indexed annually for inflation. For 2016, the deduction is $4,620 for taxpayers filing jointly and $2,310 for single filers.
Which expenses are allowed by ABLE accounts?
A “qualified disability expense” means any expenses related to the eligible individual’s blindness or disability which are made for the benefit of the individual who is the designated beneficiary, including the following expenses: education, housing, transportation, employment training and support, assistive technology and personal support services, health, prevention and wellness, financial management and administrative services, legal fees, expenses for oversight and monitoring, funeral and burial expenses, and other expenses.
Can I have more than one ABLE account?
No. The ABLE Act limits the opportunity to one ABLE account per eligible individual
Will the Oregon ABLE Savings Plan offer options to invest the savings contributed to an ABLE account?
The Oregon ABLE Savings Plan will offer qualified individuals and families multiple options to establish ABLE accounts with varied investment strategies. Each individual and family will need to project possible future needs and costs over time, and to assess their risk tolerance for possible future investment strategies to grow their savings. Account contributors or designated beneficiaries are limited, by the ABLE Act, to change the way their money is invested in the account up to two times per year.
How is an ABLE account different than a special needs or pooled trust?
An ABLE Account will provide more choice and control for the beneficiary and family. Cost of establishing an account will be considerably less than either a Special Needs Trust (SNT) or Pooled Income Trust. With an ABLE account, account owners will have the ability to control their funds. Determining which option is the most appropriate will depend upon individual circumstances. For many families, the ABLE account will be a significant and viable option in addition to, rather than instead of, a Trust program.
Where can I find more information?
For more information about ABLE accounts in general visit the ABLE National Resource Center’s website at www.ablenrc.org.
I think my child may be on the autism spectrum. What can I do to determine if my child needs an autism evaluation?
The MCHAT-R is a helpful online tool in assessing if your child may be on the autism spectrum. If the tool determines that autism is a possibility, it will construct a draft letter to your doctor asking for a referral for the autism evaluation. You can also simply ask your doctor for a referral.
Click here for the MCHAT-R tool: https://www.autismspeaks.org/what-autism/diagnosis/mchat.
For more information on what the MCHAT-R is and how doctors use it, see: https://www.autismspeaks.org/science/science-news/revised-m-chat-improves-autism-screening-toddlers.
My child needs an autism evaluation. What should I do?
In Oregon, you will need to get both a educational identification and a medical evaluation for autism spectrum disorder. These are not the same thing, have different costs and requirements, and they open the door to different services.
Why should I consider a medical evaluation for autism for my child?
A medical diagnosis will allow your child to access medical therapies for autism, including speech/ language therapy, physical therapy, occupational therapy and behavior therapies such as ABA (Applied Behavior Analysis). The exact therapies will depend on your child’s needs.
Note: You can access all of the therapies except ABA without an autism diagnosis, depending on your child’s needs.
How do we get a medical diagnosis?
To get a medical evaluation for autism spectrum disorder, you will need to get a referral from your child’s primary care provider. (If you take the MCHAT-R, a draft letter requesting a referral is prepared, but you can also simply ask your child’s doctor.)
The best practice for a medical diagnosis of autism is to have a team with different areas of expertise observe and evaluate your child over the course of a few hours. Because autism is diagnosed only by observation of behavior (and not a blood test or other physical test), it’s very important to have skilled people making the diagnosis.
On our website, we have a Professional Resource Directory, which includes a category for child diagnosis. Here is the link: http://autismsocietyoregon.org/directory/. Click on +Medical Providers/Diagnosis, then click on +Children-Diagnosis.
What is the cost of a medical diagnosis?
Depends on your insurance. Under OHP (“Oregon Health Plan,” which is Oregon’s version of Medicaid), there is no cost. Private insurance may have a copay or deductible to be paid.
If your family earns less than 300% of the Federal Poverty Guidelines (click here for the 2017 Federal Poverty Guidelines chart), your child is eligible for OHP. You can find out more information and apply for OHP at any time, here: http://www.oregon.gov/oha/hsd/ohp/pages/apply.aspx. It should take up to 45 days to approve an OHP application, but check in with them if you don’t hear back.
How long does it take to get a medical diagnosis?
This can vary widely depending on the age of the child, which facility you use and how busy the facility is. Expect a wait list and several months wait at a minimum. Older children often have longer waits. If feasible, sign up to be on the “Cancellation List.” Being on a cancellation list means that you will be called if there is a cancellation, but by definition you will get very little notice and will need to get to the facility quickly.
In addition, OHSU-CDRC and PNCC tend to have the longest wait lists as they are the best known facilities. Going to another facility may reduce your wait time.
Does insurance cover medical therapies for autism?
Yes, OHP and all private insurers are required under Oregon law to cover autism therapies based on the medical need of the person although co-pays and deductibles can still apply. The only the exception to coverage is for self-insured companies because they are not controlled by state law.
If your insurance is through a self-insured company that does not cover autism therapies, consider lobbying your company to provide the coverage and/or consider purchasing a separate policy for the child on the Oregon insurance exchange. Those policies are required to cover autism therapies and it may be cheaper to pay for the policy than to pay out of pocket for autism therapies. In addition, depending on your income, your child may qualify for OHP, or your child may qualify for OHP through a waiver under Developmental Disability Services.
Why should we consider getting an educational identification?
To receive educational support and services at school, the child must have an educational identification. A medical diagnosis is not sufficient to qualify a child for educational services.
Education services provided will depend on the child’s needs as determined by an IFSP – Individual Family Support Plan (for ages 5 and under) or IEP – Individual Education Plan (over age 5). For free help in navigating the special education system, please contact FACT Oregon at http://factoregon.org/ or 888-988-3228.
- Under age 3, services are provided at your home.
- After age 3, services may be provided up to 10 hours per week in a special education preschool.
- Once eligible for kindergarten, services are provided at your child’s school.
How do get an evaluation for an educational identification for my child?
If you child is under age 5 (not yet eligible for kindergarten), contact your local Early Intervention/Early Childhood Special Education Services (EI/ECSE). Here is the link to a brochure that provides information at EI/ECSE and contact information by county: http://www.ode.state.or.us/gradelevel/pre_k/eiecse/dyhcfinalenglish.pdf.
If you child over age 5, contact your local public school even if your child does not attend that school.
As part of the evaluation, the multidisciplinary team will observe, interact, and use other tools or methods to gather information on your child. These procedures will help the team find out how your child functions. The team will then meet with the parents to discuss whether the findings mean that your child is eligible for services
What does it cost?
There is no charge for an educational evaluation.
How long does it take to get an educational evaluation?
Under the Oregon Administrative Rules (OAR 581-015-2110), the evaluation must be completed within 60 school days (that is, days school is in session) once the parent has signed the necessary consent forms. To avoid a lengthy delay over the summer break, try to get the consent forms signed and returned to the school at least 3 months before the end of the school year.
For information about what must be included in the autism evaluation, see OAR 581-015-2130 at http://www.ode.state.or.us/offices/slp/spedoars.pdf (page 23).
There are 2 ways to obtain an autism evaluation: (1) either through a private practitioner; or (2) through Vocational Rehabilitation (“Voc Rehab”), a state agency and, in some cases, through your county Developmental Disability Services (“DD Services”) offices.
There is a fee for a private practitioner but the results are released only to you. An autism evaluation through Voc Rehab or DD Services is free, but the results will also be released to Voc Rehab to see if you qualify for their services.
How do I find a private practitioner for an autism evaluation?
There is a list of providers who do adult autism evaluations on the ASO website at: http://autismsocietyoregon.org/directory/#1478232152191-1c43570d-e7ba. Click on +Adult Resources, then click on +Adult-Diagnosis. Providers are listed by county.
You will need to contact the providers directly to find out if they are accepting new clients and what insurance, if any, they take.
Please note our disclaimer as we do not charge for the listings and do not vet them. DISCLAIMER: This Directory is being provided as a courtesy to the public only. The Autism Society of Oregon (ASO) makes NO warranty or representation as to the qualifications, character, training or expertise of the listed individual or agencies. A listing here is NOT a substitute for your own inquiry.
What is the cost for a private evaluation?
Autism evaluations can cost several hundred dollars without insurance. Even with insurance, there may be a co-pay or deductible to be satisfied, depending on your insurance coverage. Some providers may be able to work with you on the fees if you don’t have insurance, but that is up to the individual provider.
How does a free evaluation work?
If you don’t have a job or are underemployed, try contacting Vocational Rehabilitation Services (“Voc Rehab”) in your area. They are a state agency with the goal of helping individuals with disabilities find and keep appropriate employment.
As part of determining whether you qualify for their services, they will do an evaluation for disability. If you let them know that you think you are on the autism spectrum, that will include an autism evaluation. The downsides are that you don’t get to choose the evaluator and Voc Rehab is entitled to access the report since they are paying for it and are using it to determine if you qualify for services.
More information about Voc Rehab is here: http://www.oregon.gov/dhs/vr/pages/services.aspx.
Contact information for Voc Rehab offices is here: http://www.oregon.gov/DHS/Offices/Pages/Vocational-Rehabilitation.aspx
In some case, your county Department of Disability Services (“DD Services”) can provide an autism evaluation. Contact information for DD Services offices by county is here: http://www.oregon.gov/DHS/SENIORS-DISABILITIES/DD/Pages/county-programs.aspx
Can I access any services or supports even without a diagnosis of autism?
It can be a time-consuming process to obtain an autism diagnosis. Accordingly, you don’t need an official diagnosis to go to support groups for adults on the autism spectrum. Most of these groups are free or have a minimal cost. Meeting other people who are on spectrum or think they may be, can be very helpful.
We provide a list of support and social groups for adults on the ASO website at http://autismsocietyoregon.org/support/support-groups-by-region/. We list the groups we sponsor first in each region, then list all of the groups we know about in the area.
If you don’t see a group listed that would meet your needs, please contact ASO about starting one. We would be happy to provide help.