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Thursday, July 24, 2014

Caring for Iowa's special needs people

Tuesday, November 13, 2001

In my years as a volunteer and advocate for children and adults with special needs, I have learned that there is one thing on which consumers, families, advocates and providers agree - that the system of services for children and adults with disabilities is in need of change.

We have long agreed that the principles underlying our system are choice, empowerment and community. It is now time to translate these principles into action.

Our current system has grown over a period of more than 30 years, and has become fragmented and inefficient.

We now have an opportunity - and, I believe, an obligation - to

redesign the system to align resources with core services that are truly focused on creating a better future for those being served. People with

disabilities must be empowered to live in the Iowa community of their choice. They should not have to fit into pre-existing programs; instead, services should be flexible and designed to meet their specific goals.

The state is responsible for managing services for children with severe and profound disabilities. For children and families who choose to

keep a child with intensive special needs at home, we need to provide more flexible funding so they can purchase the supports they need. This kind of support for families keeps children out of costly institutional care.

For adults with mental retardation, mental illness or other life-limiting disabilities, the system is more complicated. Because much of Iowa's disability system for adults is managed at the county level, there are essentially 99 disability systems in Iowa - one for each county. Each

has its own definitions of eligibility and level of service. Services available to a person in one county may be very different from services

available to a person with the same needs in any of the other 98 counties.

Iowa law mandates that counties provide an array of services to citizens with mental retardation and that counties provide institutional services to

citizens with mental illness.

People with disabilities other than mental retardation, those with brain injury, for example, may fall through the cracks and receive few, if any, services. The same is true for people who become disabled after the

age of 21. That hardly seems fair. Most people agree that what's needed is a system that is united - that has common definitions of eligibility, core services and adequate funding.

After listening to families, advocates, agencies that provide

services, and other stakeholders I believe it is time

to redesign the system to address these needs. The solution to inequities in the system is to establish a core set of services available to all Iowans with disabilities, regardless of where they live and to address the critical

funding need this represents.

Then we need to establish a common procedure for determining who is eligible for services, what services are required, and what federal, state and county funds should be available to support those services. These are

tax dollars well spent for people who often become taxpayers themselves.

There are approximately 47,000 children and adults with disabilities in Iowa who receive publicly funded disability services. They receive more

than $695 million in residential, vocational or other support services paid for by federal, state and county tax dollars. Yet most people admit the system doesn't necessarily provide the right service in the right amount at the right time.

Now is the time to work together to design a better, more efficient, cost-effective system that truly focuses on improving the lives of those in need.