We Are All Here for Cerebral Palsy

WCPD_Logo_English_Oct_6_preview

“I am here.… We are here… and we want to the world to know!” That is the message of advocacy and self-advocacy that people with cerebral palsy and those who work with them want to convey on Friday, October 6, World Cerebral Palsy Day 2017. This campaign involves six key issues:

 

Public awareness and putting an end to stigma and stereotype. When people know what cerebral palsy is and is not, they are more likely to know the best way to interact with those who have the condition. For example, impaired or labored speech may lead outsiders to accidentally believe the person with CP has a cognitive disability when, in fact, he or she does not. Moreover, otherwise well-intentioned people will interact with those with CP by talking in a childlike way or look upon them with pity.

 

Civil rights at all levels: national, state, and local. People with cerebral palsy have the right to accessibility in public buildings, transportation, and walkways. They have the right to vote and advocate for themselves and their peers. They have the right to information and jobs.

 

Medical and therapeutic knowledge and information. The three primary medical and therapeutic issues are addressing the cause (though, at present, this is not entirely known), early diagnosis to ensure proper care during the critical first years of life, and effective treatment that include physical and occupational therapy, speech therapy, and cognitive interaction. Recently, physicians and researchers worldwide have pledged to work together to create clinical practice guidelines for diagnosis and early intervention of cerebral palsy.

 

Quality of life beyond mere survival. Beyond medical and other therapies, the overall well-being of people with cerebral palsy is of paramount concern, that is, that providing access to family and residential support services that enable them to participate in all aspects of community living with the greatest degree of independence and fulfillment possible, both in their home and the community. It also involves offering respite services to families.

 

Education for people with cerebral palsy and those who teach them. Children with CP have the right to a “full and appropriate public education.” Inclusion involves more than placing the student in a corner and ignoring him or her. These children deserve full interaction according to their intellectual ability, as well as well-trained educators to teach them. Education is the key to an independent and fulfilling life; with advocacy and assistive technology, college can be a possibility, not just a dream.

 

Making a contribution to the community and society, economically, socially, artistically, and politically. A fulfilling life is one that enables a person to contribute to society, through employment, social opportunities, artistic expression, and political involvement, including exercising the right to vote.

 

Cooking with Karen 01Cerebral palsy is the most common physical disability and childhood birth defects. The condition affects physical movement, but people with CP may have any one or a combination of learning, intellectual, visual, or hearing disabilities. Worldwide, more than 17 million people living with CP, and some 350 million family, friends, and professionals support and care for and about them.

 

Before we were Advancing Opportunities, our agency was known as Cerebral Palsy of New Jersey. Although our name change reflects the fact that we serve people with all disabilities in New Jersey, cerebral palsy is still a significant part of what we do.

 

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Our Most Notable and Favorite Disability Articles – For the Period Ending September 4, 2017

New Jersey culture and services

This wagon is one of the displays at Alstede Farms, Chester, NJ (Morris County), This farm has become a major tourist destination for people to enjoy a taste of rural life now largely a thing of the past. Photo: Daniel L. Berek

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support. As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Twitter, Google+, LinkedIn, YouTube, and Pinterest. In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them. Please click on the titles with embedded links to find the full article.
In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

 

 

Advancing Opportunities Job Announcement of the Week

As a growing agency, we have openings for part-time Direct-Support and Family-Support Professionals in residential care programs throughout New Jersey. Come meet us at one of our August open houses between 10:00 a.m. and 3:00 p.m. in various regions of New Jersey:

  • Wednesday, September 6, Parsippany. Family Resource Network, 322 U.S. Hwy. 46 W., Ste. 290, Parsippany, NJ (Eastern Morris County)
  • Wednesday, September 30, Neptune. Neptune Public Library, 25 Neptune Blvd, Neptune City, NJ 07753 (Monmouth County)

Candidates will be providing direct care to men and women with developmental disabilities in residential support programs and group home settings. If you are unable to make it to one of the job fair open houses, you can also visit us online, at: http://advopps.org/job/direct-support-professional-part-time/

 

 

Disability in the News (mostly in New Jersey, the population we serve)

Employment for people with disabilities in New Jersey and the rest of the nation are cautiously optimistic.
http://bit.ly/2iYFhPO

 

 

For Parents of a Child with a Disability (Parenting)

“As autism parents, it’s so important to take care of ourselves and here’s why.”

 

 

Special Education

An actually autistic man and highly respected author speaks out how much of education in the U.S. fails students with autism.

 

 

Employment for People with Disabilities

A writer discusses why more tech companies should hire people with disabilities.

 

 

Informative, Positive, Noteworthy (or all three!)

Positive articles like this one are always welcome! A 27-year-old filmmaker is helping people with disabilities own their narratives.

Here’s a blog piece on ten highly recommended bipolar disorder blogs, written either by people with this disability themselves or mental-health professionals.

 

 

The Arts and People with Disabilities

A 17-year-old autistic artist inspires children with autism and other special needs to paint.

 

 

People with a Disability in the Community (Disability Rights and Acceptance; Inclusion)

A New Jersey teen with autism offers autistic men haircuts.

Opinion: “My son has autism. Discrimination almost cost him his life.”

 

 

Medical News—Research

Researchers found that altered mitochondria may be associated with increased autism risk.

Passing It On: Choking Prevention for People with Developmental Disabilities — Special Needs Resource Blog

Children and adults with developmental disabilities have a higher risk of choking compared to the general population. Risk Factors Include: Some medical conditions that increase a person’s risk of choking are: Cerebral Palsy Seizure disorders Neurological and muscular disorders Down Syndrome Brain Injury Muscular Dystrophy Inability to swallow certain food textures and liquids Medication side […]

via Choking Prevention for People with Developmental Disabilities — Special Needs Resource Blog

In Addition
For New Jersey caregivers, this leaflet is a very good resource:

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Our Most Notable and Favorite Disability Articles – For the Week Ending July 21, 2017

Land of Make Believe Silo

This silo has found a new purpose at The Land of Make-Believe, Hope, NJ. This park is a popular summer destination in Warren County, northwestern New Jersey.

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support. As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Twitter, Google+, LinkedIn, YouTube, and Pinterest. In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them. Please click on the titles with embedded links to find the full article.

In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

 

 

Advancing Opportunities Job Announcement of the Week

Come to our next open house, this Wednesday!

A growing social service agency, we have openings for full- and part-time Direct Support Professionals in residential care programs all around the state. Candidates will be providing excellent direct care to men and women with disabilities in residential support programs in group homes.

We will be holding the following open house on Wednesday, July 26, from 10 to 3: Wed., July 26: Family Resource Network, 322 US Hwy. 46 W., Ste. 290, Parsippany, NJ If you are unable to make any of these events, please submit your résumé to: hr@advopps.org.

 

 

Disability in the News (mostly in New Jersey, the population we serve)

A superhero with Down syndrome stars in a new comic by a New Jersey professor.

 

 

For parents of a Child with a Disability (Parenting)

The Asbury Park Press lists 20 places for autism-friendly family entertainment.

 

 

Informative, positive, noteworthy (or all three!)

A blogger with Asperger’s talks about her marriage to a neurotypical man for 25 years.

 

 

The Arts and People with Disabilities

An art studio in Washington, DC, provides an outlet for adults with developmental disabilities to express themselves though art.

 

A summer arts camp helps children, teens, and young adults with autism hone social skills.

 

 

People with a Disability in the Community (Disability Rights and Acceptance; Inclusion)

What’s beyond Paper Mill Playhouse’s Theater for Everyone initiative, for which the acclaimed theater was recently awarded a $40,000 grant.

 

A cheerleading team comprising members with special needs breaks boundaries—and wins

 

 

Disability Awareness and Appreciation

Many women are unaware they’re autistic.

 

Enter “neurodiversity,” an umbrella under which autism, Tourette’s, and mental illnesses…

Our Most Notable and Favorite Disability Articles – For the Week Ending July 14, 2017

View of Washington's Crossing toward New Jersey

The bridge in the foreground follows the path George Washington too as he crossed the Delaware River, on his way to the Battle of Trenton. New Jersey is to the left of this view from Bowman’s Tower in Pennsylvania.

 

At Advancing Opportunities, we excel in providing residential and respite services to people of with all disabilities, along with advocacy and education services for parents and guardians and assistive technology support. As a leader in the field, we are pleased to share our experience, knowledge, and expertise with the disability community through our social media outlets: Facebook, Twitter, Google+, LinkedIn, YouTube, and Pinterest. In our Disability and Ability Highlights of the Week column, we will select the best of what we found and shared and present them. Please click on the titles with embedded links to find the full article.

 

In addition, we are specialists in the area of assistive technology and offer a huge array of services; the Assistive Technology Center is New Jersey’s premier source of information and equipment.

 

 

Advancing Opportunities Job Announcement of the Week

Advancing Opportunities is looking for a part-time Registered Nurse, licensed in New Jersey, to deliver health services to clients who are experiencing mental and physical conditions associated with mental illness and developmental disabilities in northern New Jersey. Interested candidates should forward résumé and salary requirements to: hr@advopps.org, or fax them to 609-882-4022.

 

 

Disability in the News (mostly in New Jersey, the population we serve)

Here is a list of the seven best school districts in New Jersey for students with autism.

 

Governor Christie signed an executive order to transfer key mental health services of the Department of Human Services to the Department of Health. Several state legislators say they need time to evaluate this move and how it will affect New Jersey residents with an intellectual disability.

 

 

For parents of a Child with a Disability (Parenting)

Perspective: Lessons from my son with autism, as he nears the end of high school

 

ZOOM Magazine for parents of children with autism: The latest issue is out! Another helpful free publication is Autism File.

 

“What Are the Signs My Teen Might Be Misusing ADHD Medications?”

 

 

Special Education

NPR this week featured a study: Holding Kids Back a Grade Doesn’t Necessarily Hold Them Back

 

Opinion: Why model autism programs are rare in public schools: The United States is failing most of its half million school-age children with autism by not giving them a good education.

 

 

Informative, Positive, Noteworthy (or all three!)

“The Secret Lives of Women with ADHD”

 

Naoki Higashida, the author of the acclaimed of The Reason I Jump, has written a new memoir, Fall Down 7 Times, Get Up 8. As with the earlier book, Higashida (who has severe autism and is unable to express himself conventionally in words) wrote this one with the help of assisstive technology, in the form of an electronic transcriber.

 

 

People with a Disability in the Community (Disability Rights and Acceptance; Inclusion)

Federal officials find fewer states meeting special-education obligations.

 

Doctors with disabilities offer important insights and perspectives.

 

“A Wish for Authentic Disability Representation on Television to Continue, along with a look back in time.

 

 

Disability Awareness and Appreciation

A beautiful piece in the New York Times: The Importance of Finding a Community Family—Especially when both mother and daughter have Ehlers syndrome.

 

Depression is part of many learning disabilities and autism. One writer compiled a list of what she believes to be best 10 blogs on depression.

 

 

Medical News—Research

The social ties between autism and schizophrenia: the two conditions share a long history. Comparing the social features of the two conditions could lead to better treatments and a deeper understanding of each. Links to earlier related articles are included.

 

The New York Times featured an article on the challenges children with autism face in recognizing faces. Genetics often plays a part.

Getting to Know the Miracle of Living with Deaf-Blindness

Helen Keller, deaf-blind graduate from college

Helen Keller is the most well-known deaf-blind person. With the advocacy of her teacher, Annie Sullivan, and her own determination, Helen proved one could undertake higher education and graduate.

 

 

We all know about Helen Keller, notably through the astonishing performance by Patty Duke in The Miracle Worker. Helen Keller is the most famous deaf-blind person; her name is a household word – and rightfully so. Yet, many people do not fully understand what it is to be deaf blind. With that, President Ronald Reagan in 1984 proclaimed the last week of June as Helen Keller Deaf Blind Awareness Week. To keep the awareness fresh, every year the Helen Keller National Center for Deaf-Blind Adults Youths and Adults (HKNC), publicizes this important declaration with a national campaign. HKNC is part of the National Family Association for the Deaf-Blind (NFADB).

 

 

What Is Deaf-Blindness?

What is deaf-blindness? According to the NFADB, “The term ‘deaf-blind’ seems to indicate the sum of deafness + blindness. However, the combination of these two sensory losses is much more like deafness multiplied by blindness = Deaf-blindness.” The combined loss of both senses poses unique challenges, with independence, access to  information, interpersonal communication, and special navigation is indeed profound. However, contrary to what most people believe, deaf-blindness is not a total loss of seeing and hearing. This is rarely the case. The National Center on Deaf-Blindness (NCDB) provides an excellent overview of the condition covering children, assessment in school, educational services, environment, communication, social-emotional concerns, and motor-movement issues.

 

Assistive technology in the form of Augmentative and Alternative Communication (AAC) devices are an important pathway to accessibility to full inclusion in society and independent living. http://www.assistivetechnologycenter.org/at/augmentative-communication  For New Jersey residents, the Advancing Opportunities Assistive Technology Center can be an excellent resource, offering both one-on-one assistance and the chance to try out costly equipment before committing to a purchase.

 

 

A Famous Deaf-Blind Person (Aside from Helen Keller)

Haben Girma is an Eritrean-American woman who was the first deaf-blind person to graduate Harvard Law School. As an attorney, she has been an outspoken disability advocate for inclusion, accessibility, and Universal Design. Haben recently with current Canadian Prime Minister Justin Trudeau, along with former Presidents Barack Obama and Bill Clinton, all of whom have praised her important work as a disability advocate and self-advocate.

 

 

Usher Syndrome

The most common form of deaf-blindness is a condition called Usher syndrome. Usher syndrome is characterized by hearing loss, combined with a loss of vision over time and deficiencies in balance, as the condition starts in the inner ear. There are three types of Usher syndrome, which are characterized by the severity of the symptoms. Usher syndrome is genetically inherited.

 

 

Did You Know?

  • Nearly 10,000 children and young adults are deaf-blind.
  • Some 2.4 million people in the U.S. have combined vision and hearing loss.

 

 

Further Resources

Project Sparkle Family’s Guide

Deaf-Blind Education

Eye on the Cure Blog 

Deaf-Blind International

National Coalition on Deaf-Blindness

European Deaf-Blind Network

 

Listen to Our Experience: On Epistemic Invalidation — Lighthouse

This is an excellent piece; it’s called “Listen to Our Experience: On Epistemic Invalidation,” from the Lighthouse blog. People with disabilities, especially “invisible” ones are being denied the services they seek and need. By extension, they are being denied their identity. This applies to other neurodivergent people, such as those of the transgender community.

Content warning: Discussion of the ways disabled people’s experiences are invalidated and disbelieved in society. References to pain ignored by doctors. Brief description of a fictional person with suicidal ideation.] Disabled readers. (And those with chronic illnesses, learning difficulties, and neurodivergences of all kinds.) Have you ever experienced any of the following? Having your experience […]

via Listen to Our Experience: On Epistemic Invalidation — Lighthouse