Disability Futures

Mobile phones ordinarily are strictly forbidden in the marble courtroom of the nation's highest court, but the justices are making an exception next week when roughly a dozen deaf and hard-of-hearing lawyers will be admitted to the Supreme Court bar.

The lawyers will use their phones to see a real-time transcript as they take part in an April 19 swearing-in ceremony featuring the largest group of hearing-impaired attorneys ever admitted at one time to practice before the high court.

Advocates for deaf lawyers say they hope the event will encourage others with disabilities to pursue legal careers.

"We wanted to do an event that would help break down stereotypes and demonstrate clearly that deaf and hard-of-hearing individuals can achieve anything they set their minds to," said Anat Maytal, a New York lawyer and president of the Deaf and Hard of Hearing Bar Association.

Throughout the World Down Syndrome Day event, people with Down syndrome discussed how being included in their families, schools, and communities helped them build rich and fulfilling lives. Aleksandar Matovski, a high school senior from Macedonia, described how being included throughout primary and secondary school led him to develop deep interests in poetry, music, and karate. French disability rights activist Antoine Fontenit discussed how being included as a young person helped him learn the skills necessary to hold a job, live independently, and participate in the political life of his community. New Jersey teenager AnnaRose Rubright spoke of how lifelong inclusion in her school and community has both helped prepare her to attend college and a work full-time. Equally important, she noted how inclusion allowed her to form a group of close friends with whom to share the joys and struggles of everyday life.

The U.S. Department of Agriculture’s (USDA) nondiscrimination regulation (7 CFR 15b), as well as the regulations governing the National School Lunch Program and School Breakfast Program, make it clear that substitutions to the regular school meal must be made for children who are unable to eat school meals because of their disabilities.

These regulations require substitutions or modifications in school meals for children whose disabilities restrict their diets.

USDA has a Guidance Manual “Accommodating Children with Special Dietary Needs in the School Nutrition Programs”.  It explains the school food service role in providing meals to students with special dietary needs. The Guidance Manual can be found at http://www.fns.usda.gov/school-meals/guidance-and-resources.

Nutrition Services under an IEP

The guidance addresses IDEA 2004 and the ADA and makes it clear that if a student has a documented disability that restricts their diet, the school food service department must make the substitutions as listed by a licensed physician on a medical statement form.

The physician’s statement must identify:

• the child’s disability
• an explanation of why the disability restricts the child’s diet
• the major life activity affected by the disability
• the food or foods to be omitted from the child’s diet, and the food or choice of foods that must be substituted

If your child’s IEP includes a nutrition component, the school is required to offer special meals, at no additional cost, if your child’s disability restricts her diet. When nutrition services are required under a child’s IEP, school officials need to make sure that school food service staff is involved early on in decisions regarding special meals.  It would be wise to include food service staff on the IEP Team.

- See more at: http://www.wrightslaw.com/blog/idea-and-kids-with-special-dietary-needs/#sthash.Lr0J4572.dpuf

The Older Americans Act (OAA) funds critical services that keep older adults healthy and independent—services like meals, job training, senior centers, caregiver support, transportation, health promotion, benefits enrollment, and more.

Over four years after it expired, legislation to reauthorize the Act was passed by Congress with unanimous, bipartisan support. Read about the Senate reauthorization bill and the House amendments. It should be signed by the President in April.

Join NCOA in thanking Congress for this strong show of support for the OAA and urge the same bipartisan effort in making long-overdue investments to enable these important programs to meet the needs of senior across the country.

Learn more about the OAA reauthorization progress and the changes that will be enacted, read about the recommendations that NCOA and others proposed, and review the Aging Network programs and strategies supported by the Act.

The home care industry is no stranger to high employee turnover rates. In Texas, nurses are being lured away from their jobs in home health and skilled nursing to join a different industry entirely: fast food.

More and more, nurses are leaving their jobs to work at McDonald’s for higher pay, according to EverythingLubbock.com.

“You can start of at McDonald’s at $13 of $14 dollars an hour,” Scot Kibbe, director of government relations for The Texas Health Care Association, told EverythingLubbock.com. “It’s hard when there are so many much easier jobs that pay better.”

Texas’ long-term care facilities are underfunded, Kibbe said, and the state has one of the lowest Medicaid reimbursement rates in the nation. Approximately 85% of Texans living in skilled nursing facilities rely on Medicare or Medicaid, and each Medicaid patient is underfunded by 14%—which amounts to a $300 million shortfall that skilled nursing facilities have to deal with, he explained.

This makes it difficult to pay certified nurse assistants, registered nurses and licensed vocational nurses competitively, he said. And the consequences of low reimbursement rates are being felt by those who require home health services, as well.

“You can make more money flipping hamburgers than you can helping another person,” Renee Lopez, a Texas who requires at-home nursing care, told the publication. “I think that’s a real shame because it means the people with disabilities in our community aren’t considered to be as important as getting a hamburger.”

Recent research shows people with disability are at least twice as likely to die or be injured during a disaster – and in many cases purely due to a lack of planning.

The University of Sydney, funded by the NSW State Office of Police and Emergency Services, is partnering with local communities to put people with disability in New South Wales at the centre of disaster preparedness planning.

The team is working with disaster-prone communities in Sutherland, Taree and the Hawkesbury to help community organisations, individuals and families better prepare for natural disasters to ensure people with disability aren’t left behind.

This week is Autism Awareness Week, and a young playwright from Sussex has drawn on the experiences of his own family to explore the condition.

Tom Page, who's 19 and from Eastbourne, has an older brother Ben who's autistic.

Now, the teenager has written a powerful drama which will be performed at this year's Brighton Fringe.

Malcolm Shaw spoke to Tom, and to Tim Marriott, Director of Drama at Eastbourne College.

"I just know if we could afford to get him an iPad, you know, with one of those language programs, that they would have to teach him to use it to communicate in school." "I could fight for that until they do." "He's fifteen now." "All this time they could have done more."

I kept my voice calm and even on the phone. "All this is true and that is a fine idea, but right now we have to focus on how we can make sure he has his seizure meds for the next two weeks." 

"You can't keep using his emergency meds." " Let's solve that problem together first." 

  I talked to her about the Partnership for Prescription Assistance program.  When her autistic son was out of the ER and back home stable and resting, I quietly asked what else they needed. "Have you been keeping up with your husband's medications and your own as well?" "Are you behind on your power and heating bills?" "When was the last time you and your husband ate?"

"But what do you think about my iPad idea?" She began again. "I just know if I keep him on a GFCF diet and get him an iPad, he'll be more able to ask for help when he needs it." "His service provider says he's too disabled for an iPad but I just know..." 

I told her I would send her contact information for MDTAP, The Maryland Assistive Technology Cooperative, and to reach out to them for possible assistive tech evaluations and to have him try some AAC devices on loan.   She was ashamed of her state of hunger, ashamed the DDA would discover what they'ed been doing to afford the special diet and out of pocket things for their son. She was terrified they'ed be seen as unfit parents and their son would be taken from them. 

"Promise to keep going to these food pantries?" I asked. " I promise," she answered. I told her there was no shame in needing food, that their present impoverished position had little to do with any failing on their part, and their son needed them to be fit and well nourished to help him. This was more important than anything else, that they all be healthy and safe.

Dillan, who is autistic and nonverbal, is the star of a new short film created by Apple to celebrateAutism Acceptance Day. Notably, the film tells Dillan’s story through his own words, typed out on an iPad then spoken out loud via an augmented and alternative communication (AAC) app.

The film, called Dillan's Voice, is an important departure from the way many non-autistic people often think of autistic individuals, especially those who are nonverbal. People on the autism spectrum aren’t always given agency or control over their own narratives — their stories are often filtered through well-meaning family members and caregivers looking to spread awareness.

But Dillan, like most 16-year-olds, is a teen with a lot of thoughts to express — and he can say them all. He just uses a tool to help.