Archive for June, 2009

Gap in State Infrastructure Impacts Developmentally Disabled

Developmental Disability is generally defined under state and federal law as “severe, chronic disability; manifested before age 22; attributable to a mental or physical impairment; resulting in substantial functional limitations; likely to continue indefinitely; and requiring specialized supports and services.” Developmental conditions that we typically recognize include conditions such as autism, cerebral palsy, intellectual disability, muscular dystrophy, cystic fibrosis, and spina bifida. DD may also include early onset disabilities such as spinal cord or brain injury acquired in the developmental stages of life. As diagnostics become more complex, we are seeing a number of less recognized, but equally severe conditions. While the state of Tennessee provides dedicated developmental services to persons with mental retardation (intellectual disabilities), there are no dedicated services for persons with other equally severe forms of developmental disability.

The Tennessee Department of Mental Health and Developmental Disabilities has no services and no funding for people with any form of Developmental Disabilities. Despite a legislative mandate in 2000 that changed the name from the “Department of Mental Health and Mental Retardation” to the “Department Mental Health and Developmental Disabilities” and made persons with Developmental Disabilities eligible for services beginning in March 2002, the legislative intent was never carried out.

In order to address the state’s failure to meet the mandates of a series of federal court orders related to the depopulation of the state developmental centers, the Division of Mental Retardation was moved out of the Title33-mandated department to the Department of Finance and Administration under Executive Order of then-Governor Sundquist.

The courts essentially defined a “protected” DD population in the state of Tennessee. Even though there were people with all kinds of developmental disabilities (as defined above) living in the state’s large developmental institutions, the courts defined the entire group as being “mentally retarded.” In doing so, the courts hearkened back to a time in our country when people believed (and our laws thus reflected) that all people with developmental disabilities had “mental defects.” Obviously, we now know that there are many forms of developmental disability; some forms indeed impact intellectual capabilities. Other forms impact physical and even behavioral functions. The truth is that most developmental disabilities include multiple areas of affect.

All Developmental Disabilities funding went with the Division, and when that happened, children and adults with some of the most severe forms of developmental disability in our state were simply dropped out of the equation. Over the years, commissioners under various administrations have attempted to address this gap, but with no funding stream and no definitive “home” in state government for these families, their efforts have been fruitless.

Year after year, these families are told to wait until the state gets the problems with the Division of Mental Retardation Services solved; then their issues will be addressed. The only thing is, we never seem to get the problems with DMRS solved. This year, there has been much attention focused on the Division of Mental Retardation budget cuts, the Division’s long waiting list (6,000+), and the new Initiative on Aging. Yet few Tennesseans realize there is a group of severely disabled people, many of them children, who were aren’t even on the radar screen in our state. In effect, these families are told they are second class citizens with second class disabilities, not even worthy of a home in state government.

June 30, 2009 at 3:11 pm Leave a comment

Elaine Ganick’s Fabulous Birthday Party

Elaine Ganick's Fabulous Birthday PartyElaine Ganick is a member of the board of directors of UCP. She chairs our Public Relations committee. Elaine wanted to do something special to commemorate her 60th birthday, so she is hosting her own birthday party and inviting everyone to her incredible ONE WOMAN SHOW!

“Sex in the Sixties . . . There Ain’t None!” takes you through the decades with Elaine’s unique sense of humor as she shares memories and lessons learned.

Wednesday, June 10, 2009
7:00 p.m.
HCA Auditorium
One Park Plaza
Nashville TN 37203
Phone: 615-377-7877

In lieu of gifts, Elaine asks that you make a tax deductible donation to United Cerebral Palsy.

June 4, 2009 at 9:33 pm Leave a comment

Casual Day 2009

CasDayHeader

Become a Casual Day Coordinator at your business or within another group and get your Casual Day t-shirt, art print, and goody bag FREE!

2009 Casual Day is in full swing. (Thanks to Pete Weber: Listen to our great PSA!) Over 300 area businesses and organizations participate in this annual event. Casual Day (or Casual Friday) has become such an accepted part of the business landscape that few people remember where it came from. Believe it or not, United Cerebral Palsy developed the original Casual Day in the early 90’s! In Middle Tennessee, we have celebrated UCP Casual Day since 1992. At the seventeen year mark, Casual Day has netted over half a million dollars to UCP throughout the years. 100% of these dollars have been used to provide direct services to persons with all types of disabilities in our community.

Each year, coordinators and participants at area businesses await the specially designed “Tennessee Heritage” theme, which is displayed on the t-shirts and art prints. The 2009 theme is “Tennessee Wildlife” and it features the artwork of UCP Development Director Diane Dietrich.

Click Here to become involved or place your order.

Our thanks to this year’s Casual Day Sponsors:
AT&T
Circle K
Colliers Turley Martin Tucker
Banana Boat
Macy’s
Titan’s Radio
Midtown Printing
Road Runner Courier
ImpactHealth Executives
Southeast Financial
104.5 The Zone
Pete Weber & Terry Crisp
The Nashville Zoo
Jack Hamer
Amsurg
RJ Young
Boyle
Medtronic
Chick-fil-A
Kroger
Nashville Parent
103 WKDF
Tennessee State Parks

June 4, 2009 at 9:24 pm 2 comments

How is the Economy Affecting UCP?

Or How Do I Give? Let me Count the Ways . . .

Because the State of Tennessee offers few dedicated services to many of the populations that UCP serves, we rely heavily on contributions from our generous donors. While the number of individual donors who are giving to UCP has increased over the past year, overall funding has decreased because of cuts in one of UCP’s major state contracts, the Family Support Program. (A new website details the statewide impact of this reduction. Go to: www.tnfamilysupport.org)

The economic downturn is especially hard on families served by the agency. According to Executive Director Deana Claiborne, “Some of the families who were previously making monetary contributions to UCP are now coming to us asking for help.” The number of requests for services has increased by over 10% in the past twelve months. The agency has waiting lists for most of the programs of service.

“We are asking our donors to take stock, and if they can give substantially, now is the time to make a gift,” says Claiborne. “Our families are in trouble. It is fortunate that there are so many ways to give easily from your desktop. Donors can make direct contributions to UCP through many online portals, including:

Giving Matters
Active Giving
Facebook Causes
Network for Good

June 4, 2009 at 9:01 pm Leave a comment

Metro All Together Kids Grant

All Together KidsUCP is concluding the first year of our All Together Kids Grant through Metro/Davidson County. All Together Kids is UCP’s Inclusion Program, aimed at offering the same opportunities to children with disabilities that are available to typically developing children. Despite advances to our educational systems as a result of the Americans with Disabilities Act and the Individuals with Disabilities Education Act, children with disabilities have significantly less access to community based activities than their typically developing peers. 81% of respondents in the 2009 grant pre-assessment indicate that their child has “limited or no access to opportunities for participation in integrated programs and activities in their local neighborhood or community.” 71% of respondents reported that their child has “limited or extreme difficulty interacting with typically developing peers.”

Children with disabilities are limited in exposure to activities that allow them to compete on an equal playing field, and as they grow, they have proportionately less opportunities available to them in higher education and in the workplace. All Together Kids addresses this gap by affording access to existing community and neighborhood-based arts programs, sports, recreation, day care, summer programs, camps, and the myriad of peer-related activities that round out the social, physical and intellectual development of all children.

The purpose of the Metro grant is to provide funding supports to families of children with severe disabilities in order that they may access these programs with a service plan that is specific to the individualized needs of each child, and targeted to advance personalized educational and developmental progress goals in the most integrated and inclusive environment possible. UCP also has a training curriculum for community agencies to assist with nclusion objectives and we provide technical assistance and consultation to community-based children’s programs throughout the Metro area aimed toward development of infrastructure capacity to include children with disabilities.

The 2008-09 grant continues through June 30, 2009. According to UCP program director Laura Crain, most of the requests for this year have been for assistance in enrolling children with disabilities in summer programs. At present, all of the 72 contracted slots have been filled, and 100% of the funds have been allocated. There is currently a waiting list of 32 children for the program. UCP has applied for continued funding supports for the program in 2009-10.

June 3, 2009 at 9:39 pm Leave a comment

Remembering Joy Hollins . . .

JoyHollinsThe following article was written by UCP Executive Director Deana Claiborne the day that Joy Hollins passed away. Less than two weeks later, Joy’s father Sam Hollins also passed away. Our hearts go out to the Hollins family in their time of grief.

Joy Hollins was born with severe cerebral palsy that affected virtually every system in her entire body. She needed personal supports for all activities of daily living, and she was not able to speak. Despite these immense disabilities, with the support of her family and friends, Joy was able to achieve an education and she became an integral part of her community. She learned to communicate with others through Morse code by blinking her eyes.

Joy was an active member of the Woodmont Baptist Church. She loved UCP Sports Night, and she never missed UCP picnics and many agency-wide get-togethers. She particularly enjoyed our Halloween parties where her costumes were always characteristic of her innovation and wonderful sense of humor. She and UCP immediate past president Martin McGrath were great friends. Joy and Martin advocated together on many disability issues.

Joy was an avid reader and life-long learner. The advent of computers opened new vistas in her life. Through the use of technology, Joy was able to use one foot to maneuver a tracking device. This allowed her to access a keyboard. Before long, Joy was sending emails and communicating electronically with her many friends.

When Joy was a child, her parents were told to place her in a state institution. This was at a time when many children with severe developmental disabilities were routinely institutionalized. The Hollins chose to keep Joy at home, where she thrived.

Later, when Tennessee depopulated the large state institutions and opened home and community based Medicaid waivers for persons with mental retardation, Joy did not qualify for the waiver programs. Because of her many achievements, it was evident that Joy did not have a cognitive disability. Therefore the funding and supports that were available to people with other types of developmental disabilities in Tennessee were not available to Joy. Joy always believed that supports and services should be supplied in a more equitable way, and she advocated for independent living opportunities for all people with disabilities. Despite being left out of these supports, Joy never expressed any ill will toward those who received them. Instead, she was happy when any person with a disability received a needed support.

Many of Joy’s successes in life can be credited to her persistence and determination. Without the support of her family, and in particular, the untiring care given by her loving mother, Joyce Hollins, many opportunities would have been lost. Joy was always the first to give credit to her mother for all that her mother did to impart quality to her life.

Later in life, when greater medical needs began to emerge, Joy was able to receive some home based medical supports through TennCare. She was worried that the cost of her care would result in her having to be placed in a nursing home. Instead, she died last night, quietly in her sleep, in her own home.

June 2, 2009 at 9:43 pm Leave a comment


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