Thursday, January 27, 2011

The Least Able

In his recent testimony to JFAC, Health & Welfare director Dick Armstrong said that the disabled will have to turn to their families, friends and churches as state funding for many services declines or outright disappears. Armstrong noted that in the 1950s and 1960s, many volunteers performed the services that the state now offers through its Medicaid programs. In response to Armstrong's testimony, Eye On Boise reported that Rep. George Eskridge (R-Dover) commented, "I think there's some merit there. We all have an obligation to help our fellow citizens - it's not all a state responsibility. I'm intrigued by his comment and hope there'll be some ways we're able to pursue that."

Before we assess Armstrong's idea of recruiting volunteers to provide certain services, let's review how we arrived at this point in the state's funding of programs for the disabled.

When we hear our elected and appointed officials discussing the funding of Medicaid programs for the disabled, the very loose definition of 'disabled' tends to be a range of children and adults with diagnoses like Autism, mental retardation (mild, moderate, severe or profound), some mental illnesses and other developmental disabilities. The disabled may be among the highest functioning members of society or they may be those who require constant care. They may need a Medicaid-funded life skills aide to check in on them daily to ensure they are taking their medication or they may need in-home care 24/7 that provides supervision, help with personal care and prepared meals. Medicaid funded programs also provide individual services that allow for the developmentally disabled to work in the community, benefiting both the worker as well as the community at large. Regardless of their individual disabilities, there is no denying the fact that they are the least able to lobby for their own interests and articulate their needs. In times of austerity in states like Idaho, the disabled are often the first to lose state-funded services.

How did Medicaid and the State of Idaho get into the business of providing services to the disabled in their homes and in the community? It's first essential to understand the history that resulted in the developmentally disabled and mentally ill being integrated into society. It hasn't always been this way and it is more than unfortunate that members of the Idaho Legislature are ignorant of the facts. Not so long ago, if a mother gave birth to a child with a noticeable and diagnosed disability they were urged to forget they had the child and asked to admit them to a psychiatric institution or state hospital. Each state got into the business of caring for the disabled, Idaho did so with the state hospitals in Orofino, Nampa and Blackfoot. And then in the late 1960s and early 1970s, states began the process of deinstitutionalization. Deinstitutionalization as a policy attempted to reintegrate the disabled and mentally ill into the community and greatly decreased the number of state hospitals and psychiatric institutions available for direct care. Without direct care available on the level it had been for years, families and communities began turning to the state for assistance in caring for the disabled and in doing so created a vast need for state Medicaid programs.

Today's news that further budget cuts to the state's psychiatric hospitals would continue disturbing trends that include increased assaults on state hospital staff, increased usage of restraints and seclusion to control patients, and a decreasing number of staff, is a horrible reminder of our dark history in regard to these hospitals and further proof that their are drastic consequences to slashing budgets.

Idaho was not exempt from a human rights crisis that occurred during the first half of the twentieth century in state hospitals and psychiatric institutions. While the allied forces were liberating concentration camps in Germany and Poland, conditions within state hospitals in the United States were far too similar to those in the camps.

During the period between October 1st, 1942 and September 30, 1944, 100 patient deaths occurred at Idaho State Hospital South in Blackfoot. During the same period, 79 deaths occurred at Idaho State Hospital North in Orofino. The Idaho State School and Colony, what is now the Idaho State School and Hospital (ISSH), reported 23 deaths for the same period. While the state hospital in Blackfoot currently accommodates only around 16 patients at a time, prior to deinstitutionalization it was not uncommon for that hospital to house upwards of 600 patients. The following year deaths rose again at the three state hospitals and several particularly suspicious and violent deaths at State Hospital South resulted in the governor, Charles C. Gossett, naming a commission to investigate the conditions at the hospital. Following the commission's report, funding increased from approximately $1.00 per capita per day at the Blackfoot hospital to $1.40. It was the largest increase in funding in decades and came at a time when the hospital was under staffed, under funded, and employing unqualified doctors and nurses who had little or no psychiatric training. More than half of the nursing staff was comprised of nursing students, clearly without the experience of fully trained nurses. Despite being cheap or volunteer labor, the cost to the hospital's reputation and the patients' health was great.

The discussion between Dick Armstrong and Rep. Eskridge regarding the recruitment of volunteer help to care for the developmentally disabled and mentally ill did not imply that any of the services being provided at the state hospitals would be taken over by volunteers, it is a slippery slope. If we are going to allow unqualified members of the community to provide developmental therapy that the state currently funds, when will we open the doors of our psychiatric hospitals for similar volunteer-based services? And at what cost? We've come a long way from the very dark days of the 1940s and 1950s, do we really want to go back there? Volunteers at short-staffed state hospitals could not provide adequate, safe care in the 1940s and 1950s and they can't do it now. As the DisAbility Rights Idaho Blog notes, "families and volunteers cannot replace developmental disability agency services and psycho-social rehabilitation."

In the 1950s and 1960s when Armstrong says volunteers stepped in to assist with the disabled in their communities, by and large the disabled population was not what it is today. Rather than keep them at home and in their communities, hundreds of the developmentally disabled and mentally ill were locked up in hospitals with prison-like conditions where they were left to die. Idahoans wouldn't encounter the disabled in the public library or the grocery store. Whatever volunteers were helping at that time, yes, they had a responsibility to their community, but their community consisted of a scattering of the disabled, not hundreds, if not thousands. All the volunteers in the entire state, including the families who already sacrifice for their disabled family members and friends, cannot accept the entire burden of responsibility. We've already done everything we can for our disabled friends and family. We've made the necessary adjustments to our lives when Medicaid cuts have resulted in our brother losing his daily life skills training that makes his life enjoyable and when our children have moved home because it is no longer affordable to make up the difference between what their assisted living homes ask for care and what the state is willing to pay for that care.

What has this state and our society come to when our best answer for caring for the least able among us is to scream from the rooftops that this is not the responsibility of government and that unqualified volunteers should step in?

1 comment:

Patti Dudek said...

I could not have said this better myself!