National Disability News Resource

Disability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others.

Five days each week Disability Scoop sifts through the clutter to provide a central, reliable source of news, information and resources. Plus, Disability Scoop is the only place to find original content and series like “Scoop Essentials” that take an in-depth look at what lies beyond the day’s headlines.

Autism: An Introduction for Parents and Guide to Oregon’s Human Service System

Autism: An Intro­duc­tion for Par­ents and Guide to Oregon’s Human Ser­vice Sys­tem, Fifth Edi­tion (2005)

The book­let was writ­ten and edited by two moth­ers of chil­dren with autism. It gives basic infor­ma­tion about the dis­abil­ity and sum­ma­rizes resources avail­able through the Depart­ment of Human Services.

Catherine Strong and Mary Anne Seaton first produced this booklet in 1996 as a labor of love. Both are parents of children with autism. They met when Catherine’s daughter was diagnosed 12 years ago and Mary Anne visited their home to answer the questions that Catherine and her husband Ted had about autism. That kitchen-table conversation was the inspiration for this booklet.

Download here.


Share Your Feedback with the Oregon Council on Developmental Disabilities

The Oregon Council on Developmental Disabilities is conducting its annual satisfaction survey. From their website:

Each year the Oregon Council on Developmental Disabilities conducts a brief survey to measure customer satisfaction with activities, projects and programs that the Council sponsors or co-sponsors. The results of this survey will be included in the Council’s annual report to the federal Administration on Developmental Disabilities (ADD). Survey results will also help the Council plan for the coming year.

We hope you will take a few minutes to complete this survey. You only need to answer questions related to one activity, project or program that you are most familiar with. Please respond by Friday, November 27, 2009.

Oregon Developmental Disabilities Services by County

Ever wondered what services are available beyond your own county? Check out the DD Coalition’s fact sheets on county services for more information.

Baker County
Benton County
Clackamas County
Clatsop County
Columbia County
Coos County
Crook County
Curry County
Deschutes County
Douglas County
Grant County
Harney County
Jackson County
Jefferson County
Josephine County
Klamath County
Lake County
Lane County
Lincoln County
Linn County
Malheur County
Marion County
Mid-Columbia: Hood River, Wasco, Sherman Counties
Morrow, Wheeler, Gilliam Counties
Multnomah County
Polk County
Tillamook County
Umatilla County
Union County
Wallowa County
Washington County
Yamhill County

iPhone Applications as Communication Devices

Via USA Today

Leslie Clark and her husband have been trying to communicate with their autistic 7-year-old son, JW, for years, but until last month, the closest they got was rudimentary sign language.

He’s “a little bit of a mini-genius,” Clark says, but like many autistic children, JW doesn’t speak at all.

Desperate to communicate with him, she considered buying a specialized device like the ones at his elementary school in Lincoln, Neb. But the text-to-speech machines are huge, heavy and expensive; a few go for $8,000 to $10,000.

Then a teacher told her about a new application that a researcher had developed for, of all things, the iPhone and iPod Touch. Clark drove to the local Best Buy and picked up a Touch, then downloaded the “app” from iTunes.

Total cost: about $500.

A month later, JW goes everywhere with the slick touch-screen mp3 player strapped to his arm. It lets him touch icons that voice basic comments or questions, such as, “I want Grandma’s cookies” or “I’m angry — here’s why.” He uses his “talker” to communicate with everyone — including his service dog, Roscoe, who listens to voice commands through the tiny speakers.

It’s a largely untold story of Apple’s popular audio devices.

It is not known how many specialized apps are out there, but Apple touts a handful on iTunes, among them ones that help users do American Sign Language and others like Proloquo2Go, which helps JW speak.

The app also aids children and adults with Down syndrome, cerebral palsy and Lou Gehrig’s Disease, or ALS — even stroke patients who have lost the ability to speak, says its co-developer, Penn State doctoral student Samuel Sennott.

Using the iPhone and Touch allows developers to democratize a system that has relied on devices that were too expensive or difficult to customize, Sennott says. “I love people being able to get it at Best Buy,” he says. “That’s just a dream.”

He also says that for an autistic child, the ability to whip out an iPhone and talk to friends brings “this very hard-to-quantify cool factor.”

Sennott won’t give out sales figures for the $149.99 app but says they’re “extremely brisk.”

Ronald Leaf, director of Autism Partnership, a private California-based agency, says he prefers to help autistic children such as JW learn how to navigate their world without gadgets. “If we could get children to talk without using technology, that would be our preference,” he says.

Clark says the app has changed her son’s life.

“He’s actually communicating,” she says. “It’s nice to see what’s going on in his head.”

Among the revelations of the past month: She now knows JW’s favorite restaurant. “I get to spend at least every other day at the Chinese buffet.”

H1N1 Flu Prevention

Each year, 5-20% of the worldwide population will become ill with influenza. In the United States, influenza and its complications cause an average of 36,000 deaths and 226,000 hospitalizations, as well as countless hours of missed work and medical expenses. Influenza often leads to secondary infections such as pneumococcal pneumonia. Children, newborn through 5 years, are at an especially high risk of complications, as are people over 65 years and those of any age with reduced immune systems.

Prevention of influenza requires a two-pronged attack:

1. Reduce transmission of the virus

  • Frequent hand washing
  • Cover sneezes and coughs
  • Stay home when you’re sick
  • Clean work and household surfaces often
  • Wear a mask if you have a compromised immune system
  • Ask your family, friends, and health providers to get a flu vaccination

2. Reduce susceptibility to the virus

  • Get an annual influenza vaccination
  • Get plenty of sleep
  • Exercise and eat well
  • Manage any chronic conditions

More resources here at

Oregon Council on Developmental Disabilities Policy Statements

The Oregon Council on Developmental Disabilities has posted all of its policy statements online. These statements are intended for use in advocating for improved services and supports for people with disabilities and their families.

» Aging and Developmental Disabilities

Child Care
» Child Care

» Early Intervention and Early Childhood Special Education
» Education of Students with Disabilities
» Educational Accountability and Testing
» Family Involvement in Special Education
» High School Transition
» Personnel Preparation: Teachers

» Employment

» Guardianship

Health Care
» Health Care

» Affordable, Accessible Housing
» Siting of Community Residential Programs

» Self-Determination

Quality Assurance/Quality Improvement
» Quality Assurance/Quality Improvement

Services for Adults
» Services for Adults with Developmental Disabilities

Independence Northwest Customer Plan Expenditure Report 08/09

Final tallies for Independence Northwest customer plan expenditures have just been compiled and reported to the Oregon Department of Human Services. From July 1st 2008 through June 30th 2009, Independence Northwest customers have received nearly $1 million in support services. These dollar amounts reflect actual expenditures (and not amounts allocated). Services are listed in ISPs (Individual Support Plans) and Personal Agents assist INW customers with accessing resources to meet their needs. The expenditures listed here do not reflect natural supports accessed on behalf of our customers (services such as Vocational Rehabilitation, Fairview Housing Trust, private insurance, Oregon Health Plan, etc.)

Keeping with statewide trends, Community Living Supports were the #1 service accessed by our customers, comprising over 50% of all services chosen by our customers. (For a definition of Community Living Supports, click here.) Second, coming in at almost 20% of overall services, was Community Inclusion Supports (definition here). Rounding out the top five services purchased: Respite at 10%, Non-Medical Transportation at 8% and Specialized Supports (Social/Sexual/Behavioral) at about 5% (definitions here.)

In the coming year, we expect the overall spending to increase significantly since over 80% of our total customer base have only been with us for one year (we enrolled over 370 people since July of 2008). Experience has taught us that customers tend to access more services in their second and third year as they become more familiar with resources available to them.

For a printable version of this report, click here.

Chore Services – .20% ($1,889)
Community Inclusion – 19.8% ($194,866)
Community Living/ADL – 52.8% ($520,661)
Environmental Accessibility Adaptations – 2.1% ($20,646)
Family Training – 0% ($60)
Homemaker – .10% ($652)
Non-Medical Transportation – 8% ($79,300)
Occupational Therapy – 0% ($0)
Personal Emergency Response Systems – 0% ($0)
Physical Therapy – 0% ($0)
Respite – 10.3% ($101,354)
Special Diet – 0% ($0)
Specialized Medical Equipment – .20% ($1,888)
Specialized Supports (Social/Sexual/Behavioral) – 4.7% ($46,586)
Speech and Language Therapy – 0% ($0)
Supported Employment – 1.8% ($17,784)
TOTAL SPENT FROM JULY 1st 2008 through JUNE 30th 2009 $985,688

Independence Northwest Demographics

Some quick stats on Independence Northwest’s current customer base. Independence Northwest serves 450 adults with disabilities across Multnomah, Clackamas and Washington counties.

Multnomah – 61% of our customer base
Clackamas – 23% of our customer base
Washington – 16% of our customer base

  • 65% of our customer base is under the age of 30
  • 35% of our customers are between 18 and 21
  • 57% of our customers are male; 43% are female
  • Over 20% of our customers fall on the Autism Spectrum
  • 6% of our customers experience Down Syndrome; another 6% experience Cerebral Palsy;
  • 5% of our customers experience Epilepsy; another 5% experience FAS or Drug-Affected Disorders
  • 7% of our customers are exclusively non-English speaking

UCP Releases Its 2009 The Case for Inclusion State Rankings

United Cerebral Palsy released its 4th annual report on The Case for Inclusion yesterday. The report ranks all 50 States and the District of Columbia on how well they are providing community-based supports to Americans with intellectual and developmental disabilities being served by Medicaid.

Oregon ranks 20th. Our state-specific details are here.

State by state ranking:

1. Vermont
2. Arizona
3. Alaska
4. New Hampshire
5. Massachusetts
6. Michigan
7. California
8. Hawaii
9. Colorado
10. Connecticut
11. New Mexico
12. Delaware
13. Minnesota
14. New York
15. Idaho
16. Pennsylvania
17. South Carolina
18. Florida
19. Rhode Island

20. Oregon

21. New Jersey
22. Wisconsin
23. West Virginia
24. Kansas
25. Washington
26. South Dakota
27. Montana
28. Wyoming
29. Missouri
30. Oklahoma
31. Georgia
32. Maryland
33. Alabama
34. Nevada
35. Maine
36. North Carolina
37. Utah
38. Kentucky
39. Iowa
40. North Dakota
41. Virginia
42. Indiana
43. Tennessee
44. Nebraska
45. Ohio
46. Louisiana
47. Illinois
48. District of Columbia
49. Texas
50. Arkansas
51. Mississippi

From the UCP website on the 2009 report:

  • Positively, there are 1,536 fewer Americans living in large state institutions (more than 16 beds). This is a bigger drop than seen last year. However, there remain 169 large institutions (4 fewer) housing 36,175 Americans;
  • Negatively, only nine states (down from 11) report more than 2,000 residents living in large public or private institutions – California, Florida, Illinois, New Jersey, New York, North Carolina, Ohio, Pennsylvania & Texas;
  • Sustaining the 2008 level, 19 states, but up from 16 in 2007, have more than 80 percent of those served living in home-like settings;
  • Positively, seven states – Alaska, Arizona, Michigan, New Hampshire, Oregon, Rhode Island, and Vermont- direct more than 95 percent of all related funds to those living in the community rather than in large institutions. Colorado directs a very close 94.6% of funds;
  • Positively, five states – Idaho, Louisiana, North Carolina, Ohio and Texas – as well as the District of Columbia experienced at least a five percent increase in people served in the community (HCBS waiver).
  • Negatively, Wisconsin reduced number of people served in the community (HCBS waiver) by more than five percent;
  • Nationally, 29 states direct more than 80 percent of all related funding to those living in the community;
  • Positively, 39 states, up from 33, report having a Medicaid Buy-In program supporting individuals as they go to work and increase their earnings; and
  • In terms of rankings, in total, 15 states had a sizable change in rankings over last two years. Pennsylvania (to #16 from #29 in 2007, dropping one place from 2008) and Missouri (to #29 from #41, dropping one place from 2008) improved the most with Wyoming (to #28 from #17) and Maine (to #35 from #24) dropping the most in the rankings.

Via DAWG Oregon and UCP