Independent state?

People with learning difficulties in this rural part of the US are finding it a struggle gaining access to programmes that could help them to live independently, write Jeff Bradford and Marlene Belew Huff.

While the US emphasises the “war on terrorism” at national and international levels, people with severe developmental delays or learning difficulties – still called “mental retardation” here – continue to fight their own battles for independence, autonomy and self-determination. This is especially true in rural areas of the US.

Delivery systems in rural areas that serve people with learning difficulties essentially have the same mission across the US – “to build the capacity of communities and systems to provide individually determined supports for individuals with learning difficulties and other developmental disabilities, and their families, that increase their opportunities for choice and inclusion”. Does this really happen? For many of our fellow individuals with learning difficulties, the answer is “no”.

Kentucky, one of four states in the US known as a “commonwealth”, is particularly rural, and is a place where most disabled people live in poverty. The Kentucky Department of Mental Health and Mental Retardation serves almost 2,500 individuals a year with learning difficulties. Almost 80 per cent of those served are categorised as having at least “moderate mental retardation”.

A special waiver called Supports for Community Living (SCL) has been developed in Kentucky through the Kentucky Cabinet for Health Services, Department for Mental Health and Mental Retardation. Intended as an alternative to institutional care for an individual with learning difficulties, the programme theoretically allows an individual to remain in, or return to, their community.

At first glance, the services of SCL seem to be comprehensive. They include support co-ordination; residential as well as behavioural supports; and physical, speech and occupational therapy as well as specialised supports in the workplace where applicable.

But what many parents do not know is that for these services to be in place when their child is aged 18, they must apply for them by the time the child is six. Few parents are aware of the excessive waiting lists, or that many individuals with learning difficulties will never experience these services because they “are too far down” the list.

This very situation occurred for James, a consumer who, because of the waiver programme waiting list, would not receive services for more than a decade from the time of request. James lives in a rural, impoverished area of Kentucky which lacks public transport and where medical care is scarce, with little understanding of disability issues. For James, the services that could help him to live independently were simply not available for him when he needed them.

The US, just like the rest of the world, has a lot to learn from people with learning difficulties about independence, autonomy and self-determination. Those concepts do not become real unless we ensure opportunities for expressing them are present.

Jeff Bradford is the chief executive officer of Kentucky Independent Case Management, which provides community-based services to people with mental health needs and learning difficulties – contact: kyicm@hotmail.com  
Marlene Belew Huff is an associate professor and director of the social work programme at Eastern Kentucky University, and has a disability. Contact: marlene.huff@eku.edu  

Background

• Population: just over four million people live in Kentucky
• Location: the commonwealth lies in the south-central US, along the west side of the Appalachian mountains
• Employment: mainly manufacturing and service industry occupations. The commonwealth has 12.7 million acres of commercial forest land