Frontline Initiative Supporting Families

For over 30 years, I have worked with people who have intellectual disabilities as a Direct Support Professional (DSP) in many capacities. My employment as a DSP began in March of 1968. The institution was referred to as the Faribault State School and Hospital. My title was Psychiatric Technician. Requirements for the job included six months of classroom education. I learned how to give bed baths and insulin shots, take blood pressures, and pass medications, and I learned a variety of psychological theories and human development models. My workday mostly involved bathing, feeding, changing clothing, passing medications, and cleaning. I preformed many janitorial tasks as well. This was a period of history when people with disabilities were called patients and their house was a hospital ward.

In 1968 white uniforms were required of staff, and we were told if we came to work with dirty shoe laces it was like wearing dirty underwear! Staff called each other by their last names — no first names were allowed. I can remember thinking to myself, “I can’t believe I am in the same town that I grew up in and have lived in for over 18 years” — such an unreal sterile world within a few miles of my home, school, and community. At the end of my shift, I would anxiously drive off the institutional campus back into the real world, feeling sorry for those that I had left behind.

During my 21 years of work at this institution I experienced many changes, as did those who resided within the institution. As a young adult, I can remember asking myself, “What will be in store for the people who live in this institution next year?” I saw evidence of how their lives were ruled by bureaucracy. I watched as life changes occurred for people institutionalized in accordance with policy decisions made by people in the government. I was so happy that I had freedom to choose and have control over my life, unlike those who were living in the institution at the time. The institutional environment brought sadness to my heart.

Families would come to visit their loved one at the institution usually on a weekends, when life was the most boring on the wards. When they arrived at the building, they were not allowed to come into the ward. They were told to wait in the reception area and we would bring their loved one out to them. They would visit in an area in the front of the building, go for a walk around campus, or go for a car ride. Rarely can I remember a family member visiting on the ward or unit. It was not encouraged. Often, management and professionals were nowhere to be seen. Institutionalized people had no friends to come and visit them. Their days were long and uneventful. Those of us who worked on weekends were responsible for more custodial care, with fewer scheduled staff.

We, the DSPs, had little relationship with family members. The person’s social worker made the contacts and spoke on behalf of the person. A few people would receive mail from family members; it was always a happy moment. However, all mail was pre-opened by someone before it was given to the person for whom it was intended. In the late 1960’s and early 1970’s DSPs never reciprocated with a thank you note or a letter in return on behalf of the person. Family ties were minimal compared to those I experienced in my life.

Today in Minnesota, with the closure of the institutions, community living is now afforded to all people with intellectual disabilities who require out-of-home placement. As a result, many families have been reunited with their loved ones and are celebrating new and or closer relationships. Family members have an open door invitation to come and visit anytime they desire. Families are invited to many holiday parties and DSPs actively plan and provide support for people to go visit their family members at their home. Families are involved and given the opportunity to have more direct roles in their family member’s life. Extended families are well acquainted with many DSPs and communication goes on regularly through telephone calls, mail, and outings together. 

This transformation reflects a change in philosophy toward valuing everyone. We have come to understand that all people are unique and have gifts to share. We recognize and support the concept that every family member is important and requires close relationships. Sharing love and connectedness are essential human needs. We realize that each family member has a responsibility to his or her family as a member of that family. And we support all people to have and active family role in their life.

This is such an exciting time for those who have experienced many years of segregation in institutions. We are continually working towards communities where all people are seen as citizens, enjoying active, rich community and family lives. But as far as we have come, we have even further to go to reach full inclusion.