May 2017
Tireless Work

I have always had mixed feelings about Mother's Day. The cynic in me used to see this one day as a way for everyone around mom to feel better about watching her work tirelessly the other 364 days that year. I used to laugh when I was told, "You shouldn't be doing laundry, today. It's Mother's Day!"  Right.  And do twice as many loads tomorrow? 

Moms should be honored every day - especially those who are raising children with special needs. They have, without a doubt, raised the bar on what it means to "work tirelessly." Author Marie Hartwell-Walker, Ed.D. expresses it this way:

Moms with kids with special needs are the moms for whom the first months of sleeplessness extend into years. They are the moms who become experts on their child's diagnosis and therapies and education plans. They have learned to manage endless appointments with medical specialists and endless meetings with educational experts. They have learned an awesome vocabulary of medical terminology, education jargon and insurance codes.

Complicated schedules and routines and star charts have become second nature. Those who have kids with special diets know how to spot dangerous ingredients in a cupcake from a hundred yards away. Those with behaviorally challenging kids can handle a tantrum while folding laundry and planning dinner. Many even find the energy to organize support groups, get involved with agencies that offer activities for their kids, and advocate for other families as well as their own.

I doubt I'll be successful in making every day an official Mother's Day. But, moms (& dads!) should be honored, every day, for the tireless work they do -- and for the heart behind that work. When we see special kids reaching for the stars, it's important to remember on whose shoulders they are standing to get there. 

Happy Mother's Day!
Included in the Magic

Approximately one year ago I started my journey working for Special Kids Crusade. The week I arrived in Monterey was the same week as the Spring REACH 2016 Theatre production. From the minutes those curtains opened, I knew it would be a performance that changed me for the better. To witness a diverse array of individuals putting themselves out there, working hard, and overcoming  the challenges in life over which they had no control, brought me to tears. When I wasn't tearing up, I was laughing at the genuine entertainment value of the play. Little did I know, six months later, I would be a part of this magic.

Before working for Special Kids Crusade, my experiences working with children with disabilities were primarily working with children with an autism spectrum diagnosis. My experiences had been instructive, rewarding, and, most of all, had given me the chance to support some of the coolest and most caring individuals I have ever met. However, those experiences were limited.  REACH Theatre has given me the chance to work with individuals of such a wide range of abilities.  It has helped me look past the diagnoses to see the people, themselves. Even the actors who are considered "typically developing," by society's standards, have taught me a great deal. They are willing to wake up early, give up weekends, and step outside of their comfort zones to be a part of something as special as REACH Theatre. That alone lets me know our future is in good hands.

In REACH Theatre, I am there to provide that extra bit of support when someone is having a difficult moment as well as make sure the environment is as inclusive as possible. 

The director and our executive director are so inclusive they have me on stage dressed as a sheep.  Hope to see you in the audience on May 13!
Mark your calendars!
CLICK on the links, below, for event details.
DMV Trainings & Study Time for the Deaf & Hard of Hearing Community - Mondays May 1 through June 5
EFMP Women's Support Group - Tuesday, May 2
Point Lobos Easy Access Adventures - Wed. May 3
Hidden Hills Ranch Open House to Learn about Summer Programs for Kids with Special Needs - Saturday, May 6
Special Kids Crusade's Mom's Night Out - Monday, May 8
Adult Transition Information Night - Wednesday, May 10 
Limited Conservatorship Workshop - Wednesday, May 10
Exceptional Family Member Program (EFMP) Support Group - Thursday, May 11
37th Annual Human Race in Support of LEO's Haven - Saturday, May 13
Salinas Elementary School District Community Resource Fair - Saturday, May 13
REACH Theatre presents... Jack & Jill's GIANT Beanstalk Adventure - Saturday, May 13
Community Resources Fair: Getting Help for my Child with Disabilities - Wednesday, May 17
Parents of Special Needs Support Group - Thursday, May 18
University of Southern California Community Conference: Life with Down Syndrome: Fulfillment, Health, Education, Advocacy and Inclusion - Friday, May 19
2017 Pony Champions Baseball at Toro Park - Saturday, May 20
Autism Moms Lunch - Saturday, May 20
EFMP Men's Support Group - Thursday, May 25
Can a dentist refuse to see
my daughter?
Jennifer Lucas, Advocate with the California State Council on 
Developmental Disabilities, Central Coast Office

Dear Advocate:  I've been trying to find a dentist for my daughter with special needs.  I finally found one and took her for her first appointment.  The dentist had barely entered the room when he took one look at her (her disability is visible) and rudely said he couldn't serve her.  My daughter, who was already nervous about going to the dentist, was very upset by his behavior.  This isn't okay - what should I do?
 
Let me begin with saying how very sorry I am to hear you and your daughter had such a horrible encounter.  Not only was the dentist unprofessional and disrespectful, but his behavior was a clear example of discrimination based on disability.   
 
The American with Disabilities Act (ADA) is a civil rights law that prohibits discrimination against individuals with disabilities in all areas of public life, including jobs, schools, transportation, and all public and private places that are open to the general public. The purpose of the law is to make sure that people with disabilities have the same rights and opportunities as everyone else. The ADA gives civil rights protections to individuals with disabilities similar to those provided to individuals on the basis of race, color, sex, national origin, age, and religion. It guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, state and local government services, and telecommunications.  Each of these areas of public life are addressed in the five titles (or sections) in the ADA.  In your daughter's case, she was denied equal access to public accommodations which is addressed in Title III of the ADA.
 
Places of public accommodation include over five million private establishments, such as restaurants, hotels, theaters, convention centers, retail stores, shopping centers, dry cleaners, pharmacies, doctors' offices, hospitals, museums, libraries, parks, zoos, amusement parks, private schools, day care centers, health spas, and bowling alleys.  The dentist you and your daughter attempted to receive services from is a place of public accommodation. 
 
Title III sets forth a detailed list of prohibited activities (many of which transfer easily to health care settings), as well as a series of affirmative defenses that place the burden of proof squarely on a health care facility. For example, it is considered discriminatory to impose eligibility criteria that would screen out individuals with disabilities unless a facility can show that the criteria are necessary for the provision of the services being offered.  It also would be discriminatory for a health care facility to fail to treat an individual "in the most integrated setting appropriate to the needs of the individual."
 
In the case of dental services, if a patient with a disability requires a procedure or specialized care which the dental practice does not provide, the patient may be referred to another service provider, just as would be done with a non-disabled patient.  The key component in your daughter's case is the fact the dentist did not even take the time to examine her to determine whether or not he was able to meet her needs. He made a sweeping generalization based only on what he saw,her disability. That is discrimination.
 
My recommendation is to file a Title III ADA complaint.  You may file a complaint with the Disability Rights Section (DRS) in the Department of Justice - all complaints are subject to processing and review.  One of the simplest ways to file is online ( https://www.ada.gov/filing_complaint.htm).  Once you file, the Department of Justice will let you know the next step.  Additional information on Title III complaints can be found here: https://www.ada.gov/t3compfm.htm
 
Additionally, you may wish to notify other families and community members of your experience so they are aware of what occurred with this particular dentist (i.e. yelp reviews, parent support groups, sharing your experience at applicable public meetings, etc.).  Making our office aware of your experience is also helpful so that we can follow up with the dental provider and provide disability awareness and ADA discrimination education.  Lastly, you can file a complaint with the Dental Board of California on his conduct at: http://www.dbc.ca.gov/consumers/common_comp.shtml
 
Best of luck to you in finding a qualified dental provider for your daughter!
Parents of Special Needs Children Support Group (Spanish) - Thursday, April 20