Brad Linnenkamp knows well what it's like to have your life controlled by a system. As an advocate for persons with developmental disabilities who himself has cerebral palsy, he has seen and felt the frustration that come when people are not able to make their own life decisions.

"A lot of people I work with have been getting a little frustrated," he said. "I've been in that situation myself, always being in the control of someone else."

A three-year, $400,000 grant from the Robert Woods Johnson Foundation, gives Linnenkamp hope that the frustration may end. The Kansas Self-Determination project, announced by the National Office of the Self-Determination for Persons with Developmental Disabilities Program, will provide an opportunity for people with major developmental disabilities and those who support them to gain control of their lives and resources.

Kansas is one of 18 states receiving awards totaling $5 million. According to the co-director of the national project, Don Shumway, Kansas' plan is unique because it will develop a new method to authorize and pay expenditures directly into the hands of a person with developmental disabilities or their guardians. This will mean a major change; in the past, if an individual with developmental disabilities was eligible, he or she would receive a predetermined package of services.

Linnenkamp, of Lawrence, is a member of the Kansas Self Determination Project advisory committee, which together with the project team met for the first time last Saturday.

He came away enthusiastic about hopes for persons with developmental disabilities in Kansas.

"I love the feeling of being in control," he said. "I want to be responsible for myself. Be free to make good and bad decisions, just like everybody else."

The self determination project is another step in what has been a continuous process of change in the Developmental Disabilities system in Kansas. Over the last five years, the state has focused on shifting from program and facility-based funding and services to "person centered" individual planning that helps consumers live a preferred lifestyle. The 1995 Kansas Legislature endorsed the movement with passage of the Developmental Disabilities Reform Act.

"Implementation of DD Reform put Kansas in the position of being ready to demonstrate and further refine the current service model based on choice," said Hugh Sage, MHDD commissioner. "With this project, we are working on a model in which the choices of the consumer and his or her support network are carried out through funding arrangements made directly by them."

Under the current system with DD Reform, management of community services at the local level is the job of CDDOs. Kevin Bomhoff, director of COMCARE, said his agency and others will have to be flexible to adapt to changes with self-determination. But he fully endorsed the goals of the self-determination project, saying it continues a trend toward "participant-driven" services in Kansas.

"It's making fundamental change," he said. "The program puts control of funds in the hands of consumers without a fee-for-service system or a pre-set number or type of service programs. It creates a lot of flexibility."

Bomhoff, Linnenkamp, and Dan Kline, executive director of the CDDO Tri-Valley Developmental Services in Chanute and a member of the project advisory board, all said it will not be a quick and easy process to change systems. Bomhoff mentioned communication barriers among some consumers of DD services. He also said there will be some cultural and societal barriers consumers will face because they have lacked choice for so long.

"A lot have never had free choice, and some will have a difficult time with this," he said. "And some have support from a circle of friends. But how do you provide for the people who don't have a circle of friends?"

Kline said a key in the new system will be the work of a "personal agent" of the consumer who will help manage money. "The personal agent has to really listen to what the consumer is saying and what his family or guardian is saying," he said.

The first six months of the project will focus on developing strategies by project participants and training materials through the University Affiliated Program at the University of Kansas. Initiation of self-determination one persons at a time will begin in the second six months.

Darvin Hirsch, director of developmental disabilities services for MHDD, directs the project. He said to create a system with self-determination for persons with developmental disabilities, the following components are critical:

*Consumers and their support networks must have individual budgets they control;

*A method should be established to transfer control of funds from vendors to consumers;

*Supports or services desired or purchased by the individual and the individual's guardian and family must be within state and federal requirements;

*Supports or services may be purchased from the existing array of DD services or people may develop or purchase supports from outside the traditional service delivery system;

*The amount of money currently spent for services for each individual will be less when funds are self-directed.

Hirsch said there remain many challenges to face for the current system to change. The amount of change for many challenges to face for the current system to change. The amount of change for many consumers will be huge, but in the end worthwhile.

"This is about creating a system culture which supports people in turning hopes and dreams into reality," Hirsch said.

Page Last Updated: May 29, 2001