WashPost Op Ed: When disabled children become adults, parents often are left with few options

This summer, readers of The Post learned about the horrible conditions in which twin 22-year-old autistic men were kept in their parents’ Rockville home. It is easy to blame the parents, but it’s not entirely their fault. Publicly funded services for the disabled are substantially reduced when they reach age 18 and are virtually eliminated, beyond personal and medical care, at age 21.

What happened to the Rockville family is heart-wrenching. The parents would not be in trouble if they had simply turned the children out on the street. Their legal obligation to care for them ended when the twins turned 18. But options for full-time, residential care are limited. In-home, round-the-clock care is prohibitively expensive for most families. The waiting list for services for the disabled can stretch to many years, if they are available at all, as I experienced with my son, who has autism. Continue reading WashPost Op Ed: When disabled children become adults, parents often are left with few options

NYT: The Kids Who Beat Autism

At first, everything about L.’s baby boy seemed normal. He met every developmental milestone and delighted in every discovery. But at around 12 months, B. seemed to regress, and by age 2, he had fully retreated into his own world. He no longer made eye contact, no longer seemed to hear, no longer seemed to understand the random words he sometimes spoke. His easygoing manner gave way to tantrums and head-banging. “He had been this happy, happy little guy,” L. said. “All of a sudden, he was just fading away, falling apart. I can’t even describe my sadness. It was unbearable.” More than anything in the world, L. wanted her warm and exuberant boy back.

A few months later, B. received a diagnosis of autism. His parents were devastated. Soon after, L. attended a conference in Newport, R.I., filled with autism clinicians, researchers and a few desperate parents. At lunch, L. (who asked me to use initials to protect her son’s privacy) sat across from a woman named Jackie, who recounted the disappearance of her own boy. She said the speech therapist had waved it off, blaming ear infections and predicting that Jackie’s son, Matthew, would be fine. She was wrong. Within months, Matthew acknowledged no one, not even his parents. The last word he had was “Mama,” and by the time Jackie met L., even that was gone.

In the months and years that followed, the two women spent hours on the phone and at each other’s homes on the East Coast, sharing their fears and frustrations and swapping treatment ideas, comforted to be going through each step with someone who experienced the same terror and confusion. When I met with them in February, they told me about all the treatments they had tried in the 1990s: sensory integration, megadose vitamins, therapeutic horseback riding, a vile-tasting powder from a psychologist who claimed that supplements treated autism. None of it helped either boy.

Together the women considered applied behavior analysis, or A.B.A. — a therapy, much debated at the time, that broke down every quotidian action into tiny, learnable steps, acquired through memorization and endless repetition; they rejected it, afraid it would turn their sons into robots. But just before B. turned 3, L. and her husband read a new book by a mother claiming that she used A.B.A. on her two children and that they “recovered” from autism. The day after L. finished it, she tried the exercises in the book’s appendix: Give an instruction, prompt the child to follow it, reward him when he does. “Clap your hands,” she’d say to B. and then take his hands in hers and clap them. Then she would tickle him or give him an M&M and cheer, “Good boy!” Though she barely knew what she was doing, she said, “he still made amazing progress compared with anything he’d gotten before.”

read the article

Mashable: Imagining a New Way to Read, One 3D-Printed Book at a Time

Blind and visually impaired children will now be able to experience classic picture books like Goodnight Moon and Harold and the Purple Crayon with the help of 3D printing technology.

Researchers at the University of Colorado have created a new project that can convert standard picture books into 3D-printed pages, letting children with visual impairments follow the raised illustrations by touch as the stories are read aloud.

Tom Yeh, an assistant professor in the university’s Department of Computer Science who directed the project, said the goal of The Tactile Picture Books Project is to use computer science to better people’s lives.

“I realized we could do something meaningful by interpreting pictures from these children’s books using mathematical diagrams,” he said. “This project is much more difficult than I envisioned, but it also is much more rewarding.”

Fitness for Health: a non-intimidating environment where your child can feel comfortable

We offer a non-intimidating, relaxed environment where you and your child can feel comfortable.

The first step is to arrange a time to tour our fitness facility during a complimentary 30-minute visit. During the guided tour with Marc Sickel, owner of Fitness for Health, your family can try the equipment, ask questions and meet our staff.

We feel that it is vitally important for children to be part of the decision process. If you decide that your family would like to proceed, we will schedule a time for your child to receive a Fitness for Health assessment to evaluate balance, kinesthetic awareness, locomotor skills/coordination, strength, cardiovascular endurance, sports skills and self-esteem.

At the time of the assessment, parents are asked to complete a health history questionnaire and provide reports from specialists concerning any previous injuries.

Within 48 hours of the assessment, Marc Sickel will call parents to discuss the evaluation results, and your family and the Fitness for Health staff will work together as a team to develop a personalized fitness program to match the unique needs of your individual child.

Call us at 301-231-7138 to schedule your Fitness for Health tour or assessment today!

visit their site

WashPost: Bringing more wheelchair-accessible cabs to D.C. streets and saving the city millions

He was referring to a program that could begin on a relatively modest scale in the fall, designed to save millions of dollars for the District while increasing the number of wheelchair-accessible taxi-vans on the streets of the nation’s capital.

In its early phase — a pilot program, possibly starting in October — kidney-dialysis patients (in wheelchairs or not) who live in the District and use Metro’s paratransit service would have the option of riding in any of 33 accessible taxi-vans that would be added to the city’s cab fleet.

The fares generally would be lower than on Metro’s service, called MetroAccess, officials said, and riders would be able to book trips on shorter notice. If the program works, Linton and others said, it could be expanded in coming years.

The transit agency likes the idea. The Taxicab Commission voted Wednesday to move ahead with it. And Patrick Sheehan, chairman of citizens committee that advises Metro on accessibility issues, called the plan “a win-win situation for all.”

read full article

Lollipop Kids Foundation: Summer Accessible Sailing

Although 18% of US children are living with some type of disability, accessible sports and recreational programs are limited. Most often, children with severe physical disabilities are excluded from these programs completely. The Lollipop Kids Foundation, in collaboration with the Downtown Sailing Center, has developed a summer accessible sailing program which proves that “sailing is for everyone”, regardless of ability.

Accessible sailing, when used as a form of therapeutic recreation, provides a unique setting in which multiple therapeutic modalities are addressed and employed simultaneously. Accessible sailing enhances coordination, balance, communication, comprehension and visual stimulation. Children with limited ability to sit still or concentrate are visibly calmer, relaxed and focused while sailing. Accessible sailing also builds confidence and self-esteem, prevents social isolation, increases muscular strength and flexibility, improves cardiovascular functioning and enhances the child’s overall well-being.

This program uniquely incorporates modifications needed to welcome children with disabilities, even children with the most profound physical limitations.

June 23, 5-7 pm
July 7. 5-7 pm
July 21. 5-7 pm
August 4. 5-7 pm
August 18. 5-7 pm

For more information or to register, email info@lollipopkidsfoundation.org.

visit site

Smithsonian Folklife Festival Accessible to Visitors with Disabilities

The Smithsonian Institution is committed to making the annual Smithsonian Folklife Festival accessible and enjoyable for visitors with disabilities. The 2014 Festival features “China: Tradition and the Art of Living” and “Kenya: Mambo Poa.”

The Festival will be held Wednesday, June 25, through Sunday, June 29, and Wednesday, July 2, through Sunday, July 6, outdoors on the National Mall between Seventh and 14th streets. Admission is free. Festival hours are from 11 a.m. to 5:30 p.m. each day, with special evening events beginning at 6 p.m. The Festival is co-sponsored by the National Park Service.

Visitors with disabilities who need assistance are advised to report to the Information booths located at various points around the Festival site or to the Volunteer tent located in the Festival Services area near the Smithsonian Metrorail station’s Mall exit. A large-print version of the Festival’s daily schedule and food concession menus will be available. The Festival schedule is also available in audio format. A limited number of wheelchairs will be available at the Volunteer tent for loan.

American Sign Language interpreters will be on site daily to interpret selected performances and presentations. An additional ASL interpreter is on site each day and can be reached via the Volunteer tent for visitors with requests beyond the scheduled events. Real-time captioning (CART) will be provided for selected performances and presentations. Refer to the online Festival schedule for the complete times and dates of ASL and CART services, or pick up an updated schedule of interpreted events from the Volunteer tent or Information booths.

Verbal-description and tactile tours are scheduled for Saturday, June 28, at 1 p.m. and Thursday, July 3, at 3 p.m. for visitors who are blind or have low vision. The Festival will open at 10 a.m. Saturday, June 28, to host “Morning at the Mall” with pre-visit materials for families with children with cognitive and sensory processing disabilities. Visitors interested should RSVP for both events by calling (202) 633-2921 or emailing access@si.edu.

All performance stages and narrative stages, the Flavors of Kenya stage and the Five Spice Kitchen are equipped with induction loops; receivers are available in each tent from a volunteer or Festival staff member. The Smithsonian Folklife Festival welcomes all service animals.

view the site

Design for Life Tax Incentive Program

“Design for Life Montgomery” legislation — Bill 5-13 – Property Tax Credits–Accessibility – goes into effect July 1. The new Maryland law provides tax credits to builders and homeowners for including features in new and existing residential housing that improve accessibility for persons of all ages, including seniors and those with disabilities. With this new law, the entire stock of more accessible single-family homes, apartments and condominiums in the County will increase, creating a more inclusive community.

The bill will provide for a property tax credit for an accessibility feature installed on an existing residence; provide for a property tax credit for meeting a Level I or Level II accessibility standard on a new single family residence; provide for an impact tax credit against the Development Impact Tax for Public School Improvements for meeting a Level I accessibility standard; and generally amend the County law regarding property tax credits. This bill will provide tax credits to builders and homeowners for including Level I visit-ability (up to $3,000) and Level II live-ability (up to $10,000) accessibility features in new and existing single family attached and detached homes. The impact tax credits for builders will be for new construction in single family attached and detached homes.

visit the site

Time: 16-Year-Old With Quadriplegia Goes to Prom

In October 2003, six-year-old Gena Buza and her younger sister, Sophie, were riding in a car, their grandmother at the wheel, when the grandmother lost control of the vehicle and it smashed into a tree. Gena was thrown from her seat and suffered a bruised spinal cord that left her paralyzed from the chest down. She is considered quadriplegic. 

One might expect that this is the beginning of a tale that ends in broken dreams and heartache. But the heartache wore off, the dreams have evolved and Gena is today a remarkable 16-year-old with a story to tell. I have been photographing “Gena, In Constant Motion” since 2012. Below, Gena shares a poem recounting a day that changed everything and about how she has rebuilt her life. – Taylor Baucom

Read more: “Raising My Head High”: 16-Year-Old With Quadriplegia Goes to Prom – LightBox http://lightbox.time.com/2014/06/17/raising-my-head-high-a-16-year-old-with-quadriplegia-goes-to-her-prom/#ixzz356cUPKXL

Equipment Connections for Children

Founded in 2009 as a resource for families of children with disabilities who need adaptive equipment and have no other means to obtain the equipment. Equipment Connections for Children connects costly adaptive equipment from one child with a disability who outgrows the equipment to another child who needs it. Our vision is for a world in which all available adaptive equipment is in use by the children with disabilities who need it.

Equipment Connections for Children is based in Montgomery County, Maryland and serves children in metropolitan DC area and beyond.

A child with adaptive equipment can …

  • Do more for themselves, be more independent
  • Play with their friends and siblings
  • Participate in meals and bath times
  • Change position with more ease and comfort
  • Move more often to be more healthy