News

Help HSHT’s Josh Fight Freidreich’s Ataxia

Screen Shot 2015-03-10 at 11.37.34 PMTo all of our CILNCF consumers and friends: Please read this message from the parent of one of our High School High Tech students and join us in supporting a great cause!

​Dear Friends,

I wanted to invite you to a fundraiser we are hosting on April 11, 2015 from 7:00pm to 10:00pm at the Town of Tioga Club House. It is a Wine, Cheese and Silent Auction Fundraiser to benefit the UF Foundation and specifically a gene therapy clinical trial that Josh is a part of. We are very excited about this research because it could be a potential cure but, sadly it is underfunded at the moment.

The tickets are $50 and all proceeds go directly to this research headed by Dr. Barry Byrne and Dr. Manuela Corti. We are limiting the number of guests to 100 due to space and wanted to make sure you had the chance to order tickets if you were able to attend. Please email me if you would like tickets and I will deliver them! Checks can be made out directly to the UF Foundation.

If you are unable to attend this event please consider a tax free donation to help with this cause. You can give directly online at https://www.uff.ufl.edu/OnlineGiving/FundDetail.asp?FundCode=019567&AppealCode=GMG9O or visit https://www.facebook.com/joshsfight to find out more information. We are all very optimistic and hope you will share in our excitement. Please help keep this research going. Your donations have the potential to save our children’s lives.

 

Here’s a little more information from HSHT Director, Melissa Merrill

“Josh is a senior at Buchholz High School and he was diagnosed with Freidreich’s Ataxia at the age of 10 which affects his heart and nerves. This is a progressive disease that has drastically affected Josh’s ability to walk without falling and to use his hands to write, tie his shoes, or open doors. Josh use to be very athletic, but is no longer able to play sports and this year got his first wheelchair. This disease can also cause more severe problems like diabetes and heart problems which will most likely shorten his life span. Despite all of this, Josh is the happiest person you will ever meet. He never complains, he’s always positive and enthusiastic, and is always looking for ways to help others. Josh works part time at TJ Maxx and is a fantastic student. He is hoping to go on to be an engineer and completed an internship last year with a civil engineering firm who praised him for his wonderful work on their CAD programs. I can’t say enough about what an amazing person Josh is and how excited he and his family is at the potential for a cure that will allow Josh to be more independent. Please take some time to check out Josh’s video and pass along to your contacts. Thanks so much!!”

CILNCF Executive Director Receives 2014 ABLE Trust Leadership Award

The Center for Independent Living of North Central Florida (CILNCF) is extremely proud to announce that our Executive Director, William Kennedy has been selected as The Able Trust’s 2014 recipient of the Dr. George Spelios Leadership Award.  Also known as the Florida Endowment Foundation for Vocational Rehabilitation, the Able Trust’s mission is to provide Floridians with disabilities opportunities for successful employment.  This award is a recognition of Mr. Kennedy’s many years of advocacy and leadership as a model of excellence to the business and disability communities.

After over 20 years of involvement with the CILNCF, with 14 of those years spent as its Executive Director, Mr. Kennedy has recently announced his retirement.  This award is a wonderful opportunity for the organization to say farewell to Mr. Kennedy and to thank him for many years of dedication to the CILNCF.  Mr. Kennedy’s presence and vision are largely responsible for making the CIL the force for disability rights that it is today.

Those familiar with Mr. Kennedy are aware that he leads the CILNCF consumers and staff by his example.  Mr. Kennedy is a person living with quadriplegia resulting from a spinal cord injury in his youth.  His desire for empowerment and independence led him to the independent living and disability rights movement and its goal to enable all persons with disabilities to fully participate in society.

During his tenure as Executive Director, the CILNCF has faced budget cuts from government grant programs, the unprecedented sequestration funding reductions and changes caused by the downturn in the economy.  Throughout that time, the CILNCF has continued to advocate for and serve people with disabilities in the community of North Florida and indeed has expanded its role wherever possible.  The CILNCF’s enduring success in advocacy and support is due in large part to the perseverance and determination Mr. Kennedy has exhibited throughout his life.

The Able Trust’s 2014 Dr. George Spelios Leadership Award is not only an opportunity for the community to recognize William Kennedy for his many years of service, it is also a chance for the CILNCF Board, Mr. Kennedy and the community as a whole to praise the CILNCF staff for the important work that happens at the Center every day.  The CILNCF will continue to provide their many important services like sign language interpreting, employment services, paratransit support, awareness training, wheelchair ramp construction and their High School High Tech program for teens for many years to come.

For more information, contact CILNCF Business Manager Colette Gromoll (cgromoll@cilncf.org) or Interim Executive Director Amy Tharpe (amy@cilncf.org) or by phone (352) 378-7474.

Thank you!

We’d like to thank our sponsors who have made donations for our recent fundraisers.  Thank you all so much!

Gainesville Sponsors

Alachua Restaurant Group (Flying Biscuit, Heavenly Ham)
Amelia’s
Ballyhoo Grill
Beef O’Brady’s
Best Western Gateway Grand
Blue Gill
Blue Highway A Pizzeria
Bonefish Grill
Bubbaque’s
Burger King
Café C
Carrabba’s
Chili’s
Chuy’s
Clock Family Restaurant
Cody’s
Conestoga’s
D’Lites Emporium
David’s Real Pit BBQ
Edible Arrangements
Father Phil’s
Firehouse Subs
Genghis Grill
Great Outdoors
I Love New York Pizza
Ivey’s Grill
Jason’s Deli
Krystal’s
La Fiesta
Macaroni Grill
Main Street Pie Co
Manuel’s
Maui Teriyaki
Napolatano’s
Newberry’s Backyard BBQ
Northwest Grill
Ocala Drive-In
Olive Garden
Pepper’s Mexican Grill
Pita Pit
Pomodoro
Publix
Red Lobster
Red Onion Grill
Regal Royal Park Theatre
Reggae Shack Café
Sarkara Sweets
Satchel’s
Simply Delightful Confections
Sonny’s
Sweet Frog
Target
Tasty Buddha
The Fresh Market
Trader Joe’s
UF Performing Arts Center
Wal-Mart Supercenter
Wendy’s
Wine and Cheese Gallery
Wing Zone

Ocala Restaurants
Bonefish Grill
Feta Mediterranean
Firehouse Subs
Harry’s Seafood Grill
Mojo Grill
Olive Garden
Outback Steakhouse
Red Lobster
Scrambles Café
Sonny’s
Sweetbay
Terry’s Place
The Lunchbox Café

Citrus Restaurants
Homosassa Springs Wildlife State Park
Moschello’s Pizza
Riverside Crab House
Sportsters
Sugarmill Restaurant

 

Computer Science Exploration Project | A Promising Practice in Introducing Computer Science

To expose high school students with disabilities to computer sciences and related careers, the CIL of North Central Florida’s High School High Tech program undertook the Computer Science Exploration Project. The Project offered a series of nine hands-on events. An event was held once a month and included visits to:

  • Florida State University’s High Magnetic Field Laboratory – During this visit students participated in hands-on demonstrations, self-guided tours, and visits with scientists to learn how computer technology related to the research being done in the lab.
  • Palm Bay High School – At this event participants were introduced to a competition robotics team. Students participating on the team explained the process they went through to create their robots and demonstrated their robots.
  • Sid Martin Biotech Incubator – Participants in this event were shown how computer science technology is used to enhance BioTech research.
  • New Horizons Computer Learning Center – Over the course of two visits participants learned about the school and the computer technology programs they offer, as well as the technology they use to implement their online classes.
  • Naval Air Station Jacksonville (NAS JAX) – During this event students were allowed to use the flight simulators that naval pilots utilize for training and to experience the amazing technology used to create real-world simulations in a safe environment.
  • University of Florida’s Mechanical and Aerospace Engineering Department – The University of Florida’s robotics teams and education programs opened up their lab to demonstrate their creations and explain the technology behind them.
  • GWIZ (a local science museum) – Here students were introduced to the Lego Mindstorms programmable robots. During the remaining activities in the series they programmed the robots so that they could complete specific tasks.

Evaluation results of the Computer Science Exploration Project suggest that the forty-one participants developed a greater interest in and understanding of computer science and likelihood of pursuing a career in computer science. On a Likert scale of 1 (lowest) to 5 (highest) post-event surveys 80% of the participants reported that they enjoyed the program activities and 31% reported considering a career in the computer science field. A comparison of the pre- and post-surveys revealed a 20% increase in student’s awareness, interest, and appreciation of computer science and associated career fields. The students who attended the majority of the events expressed a greater understanding of computer science. A few students reported a change in their intended career path as a result of their participation; one student who was planning a career as a professional football player changed his mind to pursue aviation after the NAS JAX trip while another student switched from the medical field to computer technology after the robotics and New Horizons events.

The Computer Science Exploration Project is a promising practice for helping students with disabilities gain a better understanding and appreciation of computer science and related career fields.

For more information about this project visit the North Central Florida High School High Tech Computer Science Exploration Project.

This activity was been funded by a minigrant from The Computer Science Collaboration Project (CSCP). CSCP is partially funded by a grant from the National Science Foundation (NSF), Division of Computer and Network Systems, Broadening Participation in Computing (CNS-0940646).

In Memoriam | Carol Terrillion

It is with the heaviest of hearts that I must inform everyone of the passing of Ms. Carol Terrillion, CIL Program Coordinator. Carol was an advocate through-and-through and lived her life to the fullest, never letting disability dictate what she could or couldn’t do.  Indeed, this was the lesson Carol taught all of us everyday.

In recent years, Carol ran our youth program in Marion County where many students had the great fortune of learning so much from her.  Carol’s example was one of survival.  She had a natural instinct to fight for a certain kind of life that was full with satisfaction and success.  She so loved her family and her daughters and grandchildren were her joy. We will all miss Carol, always.

Services are being arranged by Hiers-Baxely Funeral Services.
http://www.hiers-baxley.com/obituaries/Carol-Terrillion/#/Obituary 

Florida’s way: Nursing home profits trump sick kids’ special needs | Fred Grimm The Miami Herald

The feds just don’t understand how we do business down here in Florida. The Department of Justice’s Civil Rights Division fired off a letter to the state attorney general’s office last week, threatening to sue the state for sticking medically fragile kids in geriatric warehouses.

Apparently the feds regard these individual as mere children. In Florida, they’re considered the very cogs that keep the state’s faltering nursing home industry humming along. They’ve been privatized.

The letter from Assistant U.S. Attorney General Thomas E. Perez charged that the state was failing to provide the appropriate community-based services required by the Americans with Disabilities Act.

“Hundreds of children are currently segregated in nursing facilities throughout Florida,” Perez wrote. “They are growing up apart from their families in hospital-like settings, among elderly nursing facility residents and other individuals with disabilities. They live segregated lives — having few opportunities to interact with children and young adults without disabilities or to experience many of the social, educational and recreational activities that are critical to child development.”

If the feds come down to Florida with some outlandish notion that the welfare of young Medicaid recipients ought to trump business interests, then, sure, the situation will sound like a Dickensonian nightmare. Perhaps Perez didn’t realize it, but the reason we consign kids to old folks’ homes was explained right there on Page 6 of his 22-page letter.

“During our investigation we learned that … the state has overseen the placement of hundreds of children into nursing facilities. For a majority of the children referred to these facilities, the state pays an enhanced rate of over $500 per day per child, which is more than double what the facility receives from the State to serve elderly individuals and other adults.”

There you have it. Double the reimbursement. Nursing homes may not be so good for the children, who could be cared for at home as out-patients, probably for less money, but children are very good for nursing homes.

Back in March, a coalition of advocates filed suit against Florida’s Agency for Health Care Administration claiming that AHCA had illegally warehoused some 250 fragile children in adult nursing homes and was pressuring the parents of some 3,500 others now receiving treatment at home to move their kids into geriatric facilities.

The charges looked even more unseemly next to a report from the Florida Association for Medically Fragile Children, which stated: “The number of older men and women in nursing homes in Florida is decreasing. So owners of geriatric facilities are now competing to take fragile children in order to remain profitable, without regard to their special needs.”

The report stated, “With their eye on their shrinking bottom lines, geriatric facilities are lobbying to fill their empty beds with medically fragile children and young adults. But they are not equipped to do so. Even worse, they are lobbying to provide reduced levels of care.”

AHCA filed a narrow legal answer to the federal lawsuit, denying any illegalities, leaving the moral issues unaddressed. The agency looked bad. Gov. Rick Scott’s administration looked bad. But AHCA has remained obstinate. Paolo G. Annino, director of the Health Care Access Project at the Florida State University law school, one of the advocates behind the lawsuit, said Friday that AHCA has not even hinted at a settlement. “I’m really finding this hard to understand,” he said.

Instead, the festering lawsuit caught the attention of the Justice Department, which hired a consultant and launched its own investigation, visiting nursing homes in Miami, Fort Lauderdale, Orlando, Tampa, and St. Petersburg that housed some 200 of these children. The DOJ described finding children who could be treated at home, who could be living with their family and interacting with the community, but were kept in isolated nursing home wards. Meanwhile, Perez said, the state has cut the availability of in-home services so drastically that parents of other medically fragile children are being forced to institutionalize those kids, too.

Perez warned that the Supreme Court has held that “public entities are required to provide community-based services to persons with disabilities when (a) such services are appropriate, (b) the affected persons do not oppose community-based treatment, and (c) community-based services can be reasonably accommodated.”

The court warned that “institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable or unworthy of participating in community life.” And that “confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment.”

Sure, that may be the law. That also may reflect the values of a moral society. But that’s just not the Florida way.

If these medically fragile children expect to be treated as well as nursing home operators, well, let them hire themselves a lobbyist.

That’s how we do business here in Florida.

** Photographs are courtesy of Mike Coonan Photography and our friends from The Florida Office on Disability and Health (FODH) at The University of Florida.

Read more here: http://www.miamiherald.com/2012/09/08/2992779/floridas-way-nursing-home-profits.html#storylink=cpy

 

 

 

DD Waiver Waitlist Litigation Settled


Thursday, July 26, 2012

Dykes v. Dudek Settlement Agreement Summary

Disability Rights Florida filed the Dykes v. Dudek lawsuit in March of 2011 on behalf of individuals with intellectual and developmental disabilities who needed care, treatment, and habilitation and who were on the Waitlist for DD Medicaid Waiver services. Some of the plaintiffs resided in private ICF/DDs or nursing homes and some of the plaintiffs resided in their families’ homes. Many had been on the DD Waitlist for over five years.

The lawsuit sought to compel Florida to develop a reliable and accurate means of tracking and projecting service demand and associated trends in order to design and implement a comprehensive plan for the continued enrollment of over 21,000 persons waiting for DD Waiver services. In October of 2011, the court denied our motion to proceed as a class action and the case proceeded instead on the basis of our agency’s standing to sue and on behalf of the named plaintiffs.

On July 3, 2012, the lawsuit was settled. Under the settlement agreement the Agency for Persons with Disabilities (APD) and the Agency for Health Care Administration (AHCA) will engage in the activities described below. The agreement addresses five key areas:

  1. Individuals Residing in ICF/DDs and Nursing Homes            Click this link to continue reading…                 

Nursing Home Transition

More than 1.6 million Americans live in nursing homes and probably won’t leave the homes until their deaths. Several small studies have suggested that for-profit nursing homes, which make up two-thirds of the nation’s nursing homes, offer poor care. Of the homes in this study that had similar findings, 65.8% were investor owned, 27.7% were nonprofits, and 6.5% were public.

Nurse staffing in all types of nursing occupations was lower at investor-owned homes, which may have something to do with care quality. Investor owned homes were larger than private nursing homes, which may impact quality. Yet public nursing homes were usually larger than investor owned homes and rated higher on care quality. The most obvious explanation for poor care, the researchers theorized, is that profit seeking takes funds from clinical care. The nation’s largest nursing home often make $5.28 per patient each day. Harrington, C., Woolhandler, S., Mullan, J., Carrillo, H., & Himmelstein, D. U. (2001, September).

Does investor ownership of nursing homes compromise the quality of care? American Journal of Public Health 91(9), 1452-455. See  http://www.getriil.org/~getriil/cgi-bin/details.php?anum=783

Advocacy Update

July 17, 2012

SURVIVORS OF TROPICAL STORM DEBBY MAY QUALIFY FOR FEMA RENTAL ASSISTANCE

TALLAHASSEE, Fla. — While survivors finish repairs to their homes or find a new place to live, money may be available to help them pay for a clean and safe place to stay.

Survivors who have been staying with friends or relatives because their homes were damaged or destroyed by Tropical Storm Debby may qualify for temporary rental assistance.

Florida survivors living in a county designated for Individual Assistance may be eligible for federal disaster aid. By law, the Federal Emergency Management Agency cannot duplicate insurance benefits.  CLICK HERE TO READ MORE…

June 28, 2012

Click to view The Department's statement

The Florida Department of Children and Families (DCF) is committed to improving the delivery of services to Floridians who are deaf or hard of hearing.  It is essential that the Department eliminate or reduce barriers these clients experience when seeking services through our programs.

To reach this goal, the Department of Health and Human Services (HHS) and DCF have entered into an agreement to ensure that auxiliary aids and services are provided for these clients or their companions.  This website has been designed to provide DCF staff as well as the Department’s contracted service providers with resources enabling them to meet our goal to eliminate or reduce barriers, thus ensuring effective communication with deaf or hard of hearing clients and companions as outline in the agreement.  Questions regarding any information contained on this website should be directed to the DCF Office of Civil Rights, 1317 Winewood Blvd., Building 1 Room 110, Tallahassee, Florida 32399-0700.  Staff may also call the DCF Office of Civil Rights at (850) 487-1901 or the Region Civil Rights Officer.

http://www.dcf.state.fl.us/admin/servicedelivery/index.shtml

April 16, 2012

U.S. Department of Justice, Civil Rights Division:

According to regulations issued [by the Department of Justice, Civil Rights Division]and in accordance with the Americans with Disabilities Act (ADA) in 2010, many hotel pools are likely to be noncompliant with ADA regulations by March 12 when they take effect.  According to the regulation created in 2010, hotels must have pool lifts to provide people with disabilities equal access to pools and whirlpools or have a plan in place demonstrating they are trying to obtain a lift.  The fine for not complying with this rule is up to $55,000.  Most hotels have pools and the cost of pool lifts ranges from $3,000 to $6,000.  It is being reported that many hotels may close their pool altogether to avoid having to purchase such a lift.  New hotels being built must include the lift in the pools’ construction plan.  While the American Hotel & Lodging Association, the hotel industry’s lobby coalition, has requested that the Department of Justice extend the deadline, reports state this request was not granted and the regulations did go into effect yesterday.  Eve Hill, Deputy Chief of the Justice Department’s Civil Rights Division stated, “They’ve had quite a bit of time to do their planning.  If they have legitimate reasons in good faith that they can’t comply, then that will be taken into account.”  For more information, visit:
http://travel.usatoday.com/hotels/story/2012-03-13/Disabled-access-rule-may-close-some-hotel-pools/53517388/1.