Is it possible to provide equal rights for students with disabilities during a pandemic?

 

Section 504 is a civil rights law that prohibits discrimination against individuals with disabilities and ensures that children with disabilities have equal access to an education. It was passed in 1973!!!!

I remember when Lauren was in pre-K at an elementary school. She received physical therapy as part of her IEP. The physical therapist who covered schools in our area went on maternity leave. This resulted in no PT services for Lauren and all of the children who received physical therapy in the schools the PT covered.

So..... I filed a Civil Rights complaint against the school district. Long story short after an investigation and visits from attorneys from the Atlanta regional office of the U.S. Department of Education, they ruled in our favor! The ruling required that all of the impacted students receive compensatory services.

In a different set of circumstances, Covid-19 related issues have left children with disabilities at home and often not receiving any services. Remote delivery of services is not appropriate for many students. 

This situation has resulted in appeals to judges and state departments of education, student regression ----and many questions, some without answers. 

Is it the school districts fault when they do not provide services during a pandemic? Is it the school districts fault that the bureaucracy was not prepared? Can the school district demonstrate good faith efforts to contract with home care agencies to provide services? Are compensatory services indicated?

The following piece from NPR explores the situation. 

https://www.npr.org/2021/06/16/994587239/after-months-of-special-education-turmoil-families-say-schools-owe-them

Appreciate hearing your thoughts.

Cheers!

Donna

 

What do coffee beans have to do with job carving?

 

I just learned that Dr. Lou Brown, a leader in special education and vocational rehabilitation services passed away. Years ago, I met him at a conference. An incredible person, teacher and mentor for so many.

He would say funny, outrageous things at his presentations. He had the ability to get people to think about their preconceived notions. He was also instrumental in founding the non-profit TASH About TASH - Tash.org

He helped people with severe disabilities find jobs. Even people with limited mobility. He told the audience about a young man who was blind and had other disabilities. 

Everyone thought he was crazy when he got the young man a job in a coffee factory. He could smell and that was all he needed to know how to do to differentiate the kinds of coffee. 

Dr. Brown believed that everyone can contribute to society through "job carving". This strategy analyzes work duties in a given job and then identifies specific tasks that could be assigned to an employee with disabilities. This was radical thinking 40 years ago.

So what do coffee beans have to do with job carving? In a word, "everything"!!!!

Rest in peace, you will be missed Dr. Brown 🙌

Keeping it real,

Donna

 

No room for Lauren to volunteer at a church sponsored food pantry

 

           The Church at Auvers, Vincent Van Gogh 1890

Lauren and her supported living coach reached out to a local church sponsored food pantry regarding volunteer opportunities for Lauren.  After learning that Lauren is disabled, the Volunteer Director's response was, "I don't think this is a good place for her".

In spite of this response, Lauren's supported living coach pushed for an interview and opportunity to meet Lauren. The interview was short and resulted in being told that the program wasn't in need of any volunteers. The door was closed....no trial opportunity....just the clear message-- you are not welcome here.

In Amanda Gorman's poignant 2021 inaugural poem, "The Hill We Climb" she stated, 

"Scripture tells us to envision that everyone shall sit under their own vine and fig tree, and no one shall make them afraid.

If we’re to live up to our own time, then victory won’t lie in the blade, but in all the bridges we’ve made.

 That is the promise to glade, the hill we climb,
if only we dare it, because being American is more than a pride we inherit —
it’s the past we step into
and how we repair it."

So I ask, how can we help to "repair" our religious institutions and make them more accessible to all among us? The hill remains steep for inclusion and acceptance. 

Keeping it real,

Donna

Make a splash early!

 

Lauren didn't learn to walk until she was over 3 years old. But, she learned to swim much earlier!

I remember taking Lauren for private lessons (10 minutes a day). One day my mother came to watch the lesson. She sat at the edge of the pool in tears saying to me, "how can you do this to her?"

My response was, "because I love her and the ability to swim is a critical skill and the sooner she learns the better."

Well, the good news is that Lauren learned to swim and has enjoyed many years of joy in the water.

Sorry Mom🙏...sometimes daughter knows best!

Keeping it real!

Donna

OMG! She swallowed a whole Easter egg!

For most of Lauren's life, she was allergic to eggs. For Easter we always made Jello eggs as something to take to family Easter gatherings. 

Trays of deviled eggs were always part of  the extended family's Easter tables in spite of knowing how allergic Lauren was and how hard it was for us to keep her away from them. Oh well that's a topic for another day!

We held our family Easter dinner at Lauren's apartment this year, so of course we brought a plate of Jello eggs. 

She was so excited to see them that she grabbed one and swallowed it whole--before we could get it from her!

She looked at us like, what's the big deal and said, "Delicious"!!!

Keeping it real,

Donna

Now what? When adults with disabilities need health care.

So often parents have their heads in the sand (including me) when our children are young and receiving pediatric health care. We want to believe that our beloved pediatrician, neurologist, ophthalmologist, or dentist is going to care for our child forever. 

Reality check! 

Things will change. 

Even if the pediatric provider is willing to continue seeing your son or daughter, insurance may not cover the visits. And if the child stays on with a pediatric professional, and needs a root canal or wisdom teeth extracted or has an adult related health condition the pediatric dentist or physician may not be experienced in caring for  adults. 

So your son or daughter will ultimately be forced to move into the adult services arena. 

So you need to get your head out of the sand!

Begin networking early with other parents of children older than yours. It will  pay off to be prepared.

Keeping it real,

Donna

Don't we have enough buildings?

 

Anne Lacaton and Jean-Philippe Vassal, are this year's winners of the most prestigious award in architecture, the Pritzker. These French architects approach their work with kindness, which means never tearing down buildings to implement their own grand visions.

“When Lacaton and Vassal were asked to redesign a particularly large and hideous public housing bloc in Bordeaux in 2017, the residents told them they did not want to move, even temporarily, but they wanted bigger units. The solution, devised with fellow architects Frédéric Druot and Christophe Hutin, was to encase the building in large outdoor terraces, adding sliding glass doors to each unit, and remaking the exterior from drab concrete to something gleaming, modern and alive. Suddenly, everyone had roomy outdoor space, some of which was enclosed to be used during the winter as "winter gardens."

"The firm's approach of cost-effective, creative readaption could be a model for urban planning in the U.S., Wilson says, where demolition's been seen as a solution to deteriorating public housing in such cities as Chicago and St. Louis." 

When we think about housing for adults with disabilities, why do many think first of new construction. Don't we have enough existing apartment buildings, homes and duplexes that could work with this "kind" of architecture?

Read or listen to more at:

https://www.npr.org/2021/03/16/976893511/2021-pritzker-prize-goes-to-french-architects-who-work-with-kindness

Keeping it real!

Donna

Three girls from Texas, frozen yogurt and sprinkles!

 

In 2017, Lauren met twins, Taylor and Morgan, and their younger sister, Madison. 

The family was on vacation visiting family in Florida. It was "love" from the beginning!

During subsequent visits, the "girls" went swimming and to the movies. They got pedicures, shopped at Publix and took the group picture on the sofa.

While apart, they send gifts, cards and talk on the Facebook Portal.

During their last visit, they taught Lauren to put sprinkles on her frozen yogurt and on theirs! 

This post really isn't about frozen yogurt and sprinkles... it is about so much more. The girls from Texas have enriched Lauren's life beyond words....

Keeping it real!

Donna