October 8th, 2009

Mom, Daughter Challenge Conventional Thinking about Parenting

October 8th, 2009

by Teresa Masterson, NBC Philadelphia

Bonnie Brown has an IQ of 70. She doesn’t have a driver’s license, a bank account or a cell phone. And yet, this mentally disabled single mother has been successful in raising her gifted young daughter since birth.

“My mommy is funny and smart and never rude to anyone. She takes care of me, and I love her,” 12-year-old Myra told People Magazine in a five-page spread in the Oct. 5 issue. “Nobody’s perfect. A disability doesn’t make you who you are.”

Developmentally challenged since birth, Bonnie was left alone to care for her baby daughter after her divorce 10 years ago. But Bonnie’s disabilities didn’t stop her from being the mother that Myra needs and loves. Like most mothers, Bonnie reads Myra bedtime stories, cooks, cleans and buys the groceries—tasks that her 16 years as a french fry cook at Wendy’s has taught her to do.

“I don’t think, ‘Oh, she has a disability, how am I going to handle it?’ I think of her as a normal mom,”  said the sixth grader, who is excelling in her school’s gifted program.

Forty years ago, the Lansdowne, Pa. mother could have landed in an institution because of her mental disabilities, and the idea of her raising a child was unheard of, according to John Xuereb, a spokesman for Community Interactions – a service for people with intellectual, physical and behavioral health challenges. Community Interactions has been assisting Bonnie and Myra for years.

While Myra remembers how her mom began to struggle with helping her do homework as early as the first grade, Myra has great pride and appreciation for how her 45-year-old mother cares for her.

“Mommy is always there for me,” Myra said. “A lot of my friends don’t have a mom who is always there for them the way my mom is for me. I’m so lucky.”

A striking statement by a flourishing youth that could be eye-opening to busy, modern day parents.

Bonnie is one of the 220 people to whom the nonprofit Community Interactions brings support.

“Without them, I’d probably lose Myra,” Bonnie told People Magazine.

Community for All

October 8th, 2009

Virginia Alliance For Community Asks State Candidates:  Make "Community for All" Reforms A Priority

The Virginia Alliance for Community today called on all candidates for statewide office and House of Delegates to adopt a "Community for All" platform that reforms Virginia's system of supports for persons with intellectual and other developmental disabilities.  The Alliance – formed in 2008 by the Virginia Board for People with Disabilities, the Partnership for People with Disabilities, the Virginia Office for Protection and Advocacy, and The Arc of Virginia – provides a unified voice in advocating for the civil rights and needed services for Virginians with intellectual and other developmental disabilities.

What's the Problem?  

  • Virginia continues to inappropriately segregate persons with intellectual and other disabilities in expensive state institutions (Training Centers). 
  • Training Center costs continue to rise and have now reached an average of $194,000 a person a year at the state institutions. 
  • Community care through the ID/MR waiver for persons living in congregate settings, primarily waiver group homes, costs $95,000 per person annually—half the cost of institutional care for individuals with equivalent levels of need.
  • Virginia is one of only 10 states that have not closed any state operated institutions for persons with intellectual and other developmental disabilities.  Eleven states have already closed all of their state-operated institutions.
  • Training Centers are old and in growing need of major repairs — the "youngest" buildings at NVTC and SWVTC are already over 30 years old. Residential buildings at CVTC, SEVTC and SVTC are much older.   
  • The potential costs to rebuild or renovate all five state Training Centers would well exceed $100 million dollars, which is unjustifiable, particularly in a period of limited state revenues. 
  • Spending scarce state dollars to rebuild and operate state institutions means fewer dollars available in the future to address the state's growing waiting lists for the ID and DD waivers — well over 5,000 persons are already waiting.
  • There are now 17,000 individuals with ID or DD living at home with parents 60 years or older.  These individuals will want and will need community supports as their caregivers die or can no longer provided needed care.
  • Continued maintenance of large state Training Centers runs counter to the service design both desired by individuals with ID/DD and being pursued by the Commonwealth. Through its System Transformation Grant and Money Follows the Person initiative, Virginia is making great strides to develop an ID/DD service system that is person-centered and promotes community integration.

It is NOT reasonable to segregate people in institutions when experience and research prove that even people with significant disabilities and intensive needs can be supported in the community.

It is NOT reasonable to continue to invest scarce public dollars operating large, inefficient state institutions when there is a better way. 

It is NOT reasonable to deny persons with disabilities the right to live among us in the community if needed supports are provided.     

What's the Solution? 

  • Commit to transition Virginia's segregated, institutional system by adopting "Community for All" policy. 
  • Halt future plans to rebuild state Training Centers.  Virginians with the most significant disabilities can — and do – live in their own community homes when appropriate supports are available to them.  Capital outlays can be leveraged with community housing money to significantly expand available, limited state dollars.
  • Consider the fiscal reality.  Is it the best use of limited resources to spend $194,000 to support an individual in a state operated institution when individuals with like needs are being supported in the community for half that cost?   
  • Make a true long-term commitment to eliminating waiting lists for waivers and other supports by developing and adopting a reform plan that transitions Virginia from its inefficient institutions to innovative, person-centered supports in the community.

Now is the time for disability reform in Virginia. It is no longer morally or fiscally responsible to invest in segregated settings for our citizens with disabilities. As friends, neighbors, self-advocates, and taxpayers, we ask all state level candidates — gubernatorial and legislative – to end this segregation and make community living for all Virginians with disabilities a priority in their campaigns as well as in their legislative initiatives. 

Jamie Trosclair, Arc of Virginia 
(804) 649-8481, ext. 101, jtrosclair@arcofva.org