Interveners and Children Who are Deaf-Blind

Interveners are great supports in any environment, not just school....
http://goo.gl/vA6Rks

The importance of intervener services today for many children who are deaf-blind children cannot be overstated. The National Center on Deaf-Blindness (NCDB) defines this service as providing access to information and communication and facilitating the development of social and emotional well-being for children who are deaf-blind.

In educational environments, intervener services are provided by an individual, typically a paraeducator, who has received specialized training in deaf-blindness and the process of intervention. An intervener provides consistent one-to-one support to a student who is deaf-blind (age three through 21) throughout the instructional day.

The NCDB is funded by OSERS’ Office of Special Education Programs (OSEP) as a national technical assistance center to improve the quality of life and educational opportunities for the roughly 10,000 children who are deaf-blind. Deaf-blindness is a low incidence disability and within this population of children there is great variability. Ninety percent of children who are identified as deaf-blind have additional physical, medical and/or cognitive disabilities. Without supports, these children are cut off from most, if not all, communication and activities in their environments. Thus, it is clear that many of these children can, and do, benefit from services offered by trained interveners.

Because we recognize that parents are best able to describe their child’s educational experience, consider these comments from parents of children who are deaf-blind who have written to express their thoughts about what happens when their child has an intervener:


Michigan Secretary Of State Says Absent Voter Bill Is "Imperative"

http://goo.gl/dcTj9q

 Republican Secretary of State Ruth Johnson says it's "imperative" that voters be able to cast an absentee 

ballot for any reason now that the straight-party voting option has been eliminated from ballots.

Johnson told The Associated Press on Wednesday that enacting no-reason absentee voting legislation would alleviate local clerks' fears of longer lines caused by people needing more time to vote. Gov. Rick Snyder endorsed the bill Tuesday while approving the removal of the straight-ticket option.

Johnson says she would have liked it if Snyder could have signed the bills together, but she stopped short of criticizing his decision. She says while there are "good reasons" to do away with straight-party voting, the GOP-led Senate should vote on the House-passed bill to let people vote absentee for any reason


Fliers With Disabilities Could See Airline Changes In Future

https://goo.gl/CZROo9

The U.S. Department of Transportation said it was looking at ways to, among other things, ensure that fliers with disabilities have better access to in-flight entertainment and to bathrooms on single-aisle airplanes.

The department, in a Dec. 7 posting in the Federal Register about service for people with disabilities, noted “the industry trend toward greater use of single-aisle aircraft that are not equipped with accessible” bathrooms on mid-length and longer flights.


The Rosie Project: A Novel

http://goo.gl/iLBjsr

The art of love is never a science: Meet Don Tillman, a brilliant yet socially inept professor of genetics, who’s decided it’s time he found a wife. In the orderly, evidence-based manner with which Don approaches all things, he designs the Wife Project to find his perfect partner: a sixteen-page, scientifically valid survey to filter out the drinkers, the smokers, the late arrivers. 


Rosie Jarman possesses all these qualities. Don easily disqualifies her as a candidate for The Wife Project (even if she is “quite intelligent for a barmaid”). But Don is intrigued by Rosie’s own quest to identify her biological father. When an unlikely relationship develops as they collaborate on The Father Project, Don is forced to confront the spontaneous whirlwind that is Rosie―and the realization that, despite your best scientific efforts, you don’t find love, it finds you.

Deaf Artist Christine Sun Kim Is Reinventing Sound

http://goo.gl/A13GdS

For artist Christine Sun Kim, sound is a "ghost." The multiple-MFA-holding Senior TED Fellow who has had a Whitney Museum residency and exhibited at MoMA, has been profoundly deaf since birth. The sonic hush in which she lives has pushed her towards exploring sound through her work in a varied oeuvre of performance, installation, drawing, and video.

Her information system make the rigid definition of sound as anesthetized vibrations meeting a hearing ear feel nothing short of antiquated. It does this by capturing life in a world where sound is funneled more through social interactions than through ears. Because of this, experiencing her work is similar to the moment when one realizes listening to the same song in the dark is different than hearing it in the light.

Kim's work is conceptually strong, but its real power comes from the way it honors and dignifies her own experience. In the perceptual regime that is hearing culture, Kim tells dominant sonic norms to go screw themselves. They represent a limiting etiquette, not her actual relationship with sound. As Kim pointed out in a past TED interview: "It was not like society gave me a clear, safe space to do whatever I wanted. I had to learn how to integrate their ways."


Why Parents Live Tweeting Their Disabled Children's Worst Moments Is Red Flag That Should Concern Everyone

Imagine a parent posting a video of a non-disabled son or daughter's worst moment...

http://goo.gl/21LmyU

There is a pattern I have observed among special needs parents who later do harm to their children. This is how the pattern plays out.

1. The parents spend over 60% of their days generating written content that disparages their child and presents themselves as martyrs for having to parent divergent children.

2. The parents escalate to posting videos of their children at moments of crises in order to support their case that the child is at fault for the failed lives of their parents. No one questions whether the parents induce crisis in order to record content that can be publicly shared.

3. The parents are successful in gaining either local or national media attention, thereby rewarding the production of content damaging to a disabled child that will remain on the internet forever.

4. The parents crowdfund for assistance from the community based upon the negative content produced about their children.

5. The parents attempt to murder their children.

6. The parents are defended by others for attempting to murder or murdering their children because prior negative content showing their disabled child at a moment of crisis is used as an excuse.

MPAS Gets Federal Guidance on Behavior Support

http://goo.gl/2DHFx7

One of the most powerful and effective tools for students with disabilities who have behavior issues at school is the Behavior Intervention Plan (or BIP). The Individuals with Disabilities Education Act (or IDEA) says that the use of a Behavior Intervention Plan can be an important part of a Free and Appropriate Public Education and may be one of the supports written in a student's Individualized Education Program (or IEP). If the school fails to use a Behavior Intervention Plan that is written into the student's IEP as a needed support, the school is failing to implement the IEP in the way that they should under the law. 

Even though the Michigan Department of Education, Office for Special Education (or MDE) is responsible for making sure that Michigan schools follow the law, they have refused in the past to investigate complaints that point out schools' failures to use BIPs that are part of students' IEPs. Michigan Protection and Advocacy Service, Inc. (or MPAS) has tried to get MDE to change their position on this, but they have refused to reconsider. As a result, MPAS turned to the Office for Special Education Programs (or OSEP), which is a federal agency that watches over MDE and makes sure they follow the law. 

In its July 16, 2015 "Letter to McWilliams", OSEP declared that MDE was wrong and said that when this kind of complaint is filed, MDE should look into whether the BIP was put into use by the school, and whether it was appropriate for the student. OSEP also confirmed that a BIP can be written into an IEP as a supplementary aid and service at any time.

A copy of the OSEP "Letter to McWilliams" is available for review here.


AAP: Schools Need Action Plans for Epileptic Students

http://goo.gl/GwZKtv

Physicians should work with school officials to come up with individualized action plans to treat students with epilepsy in the case of prolonged seizures, according to the American Academy of Pediatrics(AAP) in the group's first-ever clinical report on the subject.

Such plans should outline which medication the child will receive, who will be administering it, and when and how to seek other emergency medical care if needed, according to the report authored by Adam L. Hartman, MD, and Cynthia Di Laura Devore, MD, of the AAP's Section on Neurology and Council on School Health. The report was published simultaneously in Pediatrics.


S. 2427: To prohibit discrimination against individuals with disabilities who need long-term services and supports, and for other purposes.

The Disability Integration Act of 2015, introduced by Chuck Schumer.....

https://goo.gl/IE95UW

(b) Purposes.—The purposes of this Act are—

(1) to clarify and strengthen the ADA’s integration mandate in a manner that accelerates State compliance;

(2) to clarify that every individual who is eligible for long-term services and supports has a Federally protected right to be meaningfully integrated into that individual’s community and receive community-based long-term services and supports;

(3) to ensure that States provide long-term services and supports to individuals with disabilities in a manner that allows individuals with disabilities to live in the most integrated setting, including the individual’s own home, have maximum control over their services and supports, and ensure that long-term services and supports are provided in a manner that allows individuals with disabilities to lead an independent life;

(4) to establish a comprehensive State planning requirement that includes enforceable, measurable objectives that are designed to transition individuals with all types of disabilities at all ages out of institutions and into the most integrated setting; and

(5) to establish a requirement for clear and uniform annual public reporting by States that includes reporting about—

(A) the number of individuals with disabilities who are served in the community and the number who are served in institutions; and

(B) the number of individuals with disabilities who have transitioned from an institution to a community-based living situation, and the type of community-based living situation into which those individuals have transitioned.

Tools and resources to help you work with professionals

As a friend of mine describes it, "When professionals Attack"....

https://goo.gl/AMjHt0

Here is a selection of resources and tools that are aimed at helping you work with the people you may encounter as a result of your child's condition.

Our Family, My Life

The Our Family, My Life resource is a family-held or young person held record, which brings together all relevant information about a child’s or young person’s needs and services supporting the child/young person and family. Our Family, My Life is for families with children who need help and support or for young people who would like to take control of their support for themselves

MAPIT

MAPIT enables different groups, including schools and service users to review current arrangements, identify service development priorities and track progress over time. The evidence that is collected as it is being used is relevant for lots of other planning, audit and inspection purposes.

Developmental journals

The Early Support Developmental Journals are designed to help families, teachers and other practitioners better support development especially where children or young people have special educational needs and disabilities.

The Council for Disabled Children has also produced an Information resource about people you might meet during the process of diagnosis and during ongoing support and treatment. You might also find their list of useful contacts and organisations helpful.

You might have heard of one page profiles. These are documents that tell people about your child, or yourself in one side of paper. It usually has three sections: what others appreciate and enjoy about the person, what they like to do (from their perspective) and how best to support them. You can read more about them here and about how they can be useful in developing an approach that puts you and your child at the centre of any planning.