Integrity and Accountability: Addressing Safety and Quality while Assisting People with Developmental Disabilities in Dane County to Author Their Own Lives

What matters most to people’s safety is the extent and quality of their relationships. People are safer the more others care enough about their safety and well-being to keep a close eye on their situation, to stand up to difficult situations with them, to act imaginatively in response to their vulnerabilities, to negotiate on their behalf with others who control important opportunities, and to struggle with them over situations in which they are contributing to their own problems.[*]

We are continuously learning to better support people with developmental disabilities and their families within our Dane County communities. In less than 25 years, our county has made huge strides in replacing a century of segregation, congregation and institutionalization with a system of support and services increasingly focused on helping each person we serve create a life within their neighborhoods in Madison, Waunakee, Mt. Horeb or another of our cities, towns or villages. An essential foundation of our work has been and will continue to be an emphasis on paying attention to people’s potential vulnerabilities as we break down the barriers to inclusion and participation within our communities.

It is difficult to define these issues clearly without using old words which were born in a previous age. The word “quality” has historically been used as an adjective in our system, usually placed in front of terms such as “compliance” or “assurance.” In such contexts, quality typically refers to issues of safety, and most often to being safe from abuse or neglect within facilities or by caregivers. More recently quality has been discussed in terms of “quality of life,” with a growing understanding that the people we serve are citizens within a country that places high value on each individual defining what quality means in his or her life. For now, we will continue to use the concept of quality in both contexts, while our vocabulary struggles to keep up with our learning.

It is important to be clear about our intent to support people in ways which account for their disabilities, which account for the inexperience which many people have had in living in our communities, and which account for the presence of people in our society who will willfully or neglectfully harm or exploit others. We have developed a system that begins with enforcement of the laws which protect all citizens and which place additional safeguards on top of them. We have learned, as noted in the paragraph on the title page, that what matters most to people’s safety is the extent and quality of their relationships, and we are continually working towards creating a system that enhances rather than limits people’s relationships.

We have also learned, both from those we serve and from reflecting upon our own lives, that what matters most in life is the extent and quality of our relationships … our relationships with one another and our relationships with other elements of this wondrous world in which we live. We want our system of support and services to enable people to have lives rich with experiences and relationships. The “quality” of our system will be directly related to the extent to which we are successful in this regard.

The following summary describes key elements of our system of “safety and quality” for people with developmental disabilities who we support in Dane County:

Developing an individual support and services plan

All people receiving support and services do so utilizing a planning process that identifies needs and describes how those needs will be met. The elements of this process listed below set the framework for paying attention to the important issues in a person’s life. The last two items have been added to the planning process specifically for people who will be utilizing an individual budget to obtain support:

  • A description of how the person wants to live (What are the person’s goals? Where does he/she want to live? With what type and amount of support? How would the person choose to spend time, given the opportunity?);
  • a budget describing what goods, support and services will be purchased;
  • a description of how support will be provided (both paid and unpaid);
  • identification of existing and potential issues of risk;
  • identification of and response to health care needs;
  • the “outcomes” a person expects from people and agencies providing paid support; and
  • those elements of a person’s life which are “non-negotiable.”

Using Existing Laws

While other citizens (including provider and county staff) may assist and support a person in our system who has been harmed, law enforcement officers and prosecutors throughout Dane County have become more sensitive to the potential vulnerability of people with significant disabilities. Harming and stealing from people is against the law and is expected to be investigated and prosecuted by law enforcement officials. Dane County Department of Human Services quality assurance staff participate in the Dane County Commission on Sensitive Crimes Task Force and on the Victim Outreach Subcommittee of that task force. Staff will be involved in further training of law enforcement agencies, as well as in additional training of service provider agencies to more effectively work with law enforcement.

Roles of County Administration and Staff

A number of procedures have been implemented to address issues that may compromise the well-being of a person receiving services. Other activities relate to proactive measures that are designed to decrease the likelihood that people will intentionally or unintentionally harm or neglect someone receiving support. These procedures and activities include:

  • Clearly stated rights and grievance procedures;
  • Requirements in contracts with service providers to:
    • notify the County of incidents which may compromise an individual’s well-being, whether or not the incidents are a criminal offense;
    • follow all county abuse and neglect guidelines;
    • investigate and resolve the incident, and provide a written report to the county of their review and resolution; and
    • check past employment records of direct service providers, and share information on past employees with other agencies.
  • A variety of ways for county staff to respond to incidents which may compromise a person’s well-being, including:
    • referring the incident to law enforcement officials;
    • completing a direct investigation of the incident;
    • referring the investigation to an outside consultant;
    • using consultant services to assist in conflict resolution or mediation of complex situations involving people with disabilities, families, guardians, advocates and providers; and
    • using county staff to assist in conflict resolution or mediation of complex situations involving people with disabilities, families, guardians, advocates and providers.
  • Monthly meetings of the Dane County Elder Abuse and Vulnerable Adult Team, which reviews specific examples of potential abuse or neglect and works to help agencies better prevent and respond to their occurrence;
  • Quarterly meetings with all agencies to problem-solve around both systemwide and individual issues;
  • Monthly meetings to provide special attention to and address Adult Family Home issues;
  • The capacity of Dane County Case Management to provide extra support if needed as a result of a problematic situation;
  • The process to use the courts in evaluating the need for guardianship and mandatory serviced orders;
  • The availability of a crisis response for people who may need another place to live or additional support in their own home during a problematic situation;
  • Annual evaluations by County staff of how things are going for a number of people living within each residential services agency, using a format described within the County Guidelines for Supportive Home Care Agencies for Adults with Developmental Disabilities;
  • Annual evaluations by County staff of how things are going for a number of people supported by each vocational services agency;
  • The recent addition of an Ombudsman position within the Dane County Department of Human Services; and
  • Support to a newly created Quality Assurance Board.

Role of the Quality Assurance Board

A Quality Assurance Board has been established which consists of volunteers who are interested in improving the quality of our developmental disabilities services system. The Quality Assurance Board plays a number of significant roles, including:

  • Reviewing, analyzing, and providing feedback on the manner in which providers, support brokers and county staff respond to identified problems with services;
  • Identifying and publicizing patterns and trends which enhance or impede the quality of life experienced by the people we serve;
  • Overseeing a new system of continuous quality review and improvement of the support and services people are receiving individually and collectively;
  • Developing and reviewing outcomes from satisfaction surveys and focus groups on particular issues; and
  • Assisting in the resolution of individual conflicts by offering an informal opportunity for mediation.

Roles of Support Brokers for People Who Have an Individual Budget

Support brokers play an important role in facilitating effective interdependence among people with developmental disabilities who depend upon the county human services system, agency and individual providers of support and services, family members and guardians. Roles that relate directly to quality and safety include:

  • An active role in helping identify “non-negotiable” outcomes and issues of health, safety and rights for each person; and in assuring those outcomes and issues are addressed on an ongoing basis;
  • An active role by Support Brokers in affirming they have current personal knowledge of each person’s living situation and that either
    1. they can affirm that the person is living in safe and decent conditions, that the person’s human rights are respected, that the person’s money is appropriately managed, that the person is receiving needed health and dental care, and that the person is receiving adequate assistance to deal with the consequences and vulnerabilities of her or his particular disability; or
    2. if one or more of these conditions is not met that they are personally involved in efforts to assure that they are met; and
  • A requirement for support brokers to notify county staff if issues arise which place a person at risk.

The efforts summarized above do and will contribute towards helping the people we support live fuller and safer lives within Dane County. They do not stand alone as a series of mechanisms to assure quality. The quality of the system we are continuously working to improve attempts to build and strengthen relationships among people with developmental disabilities; their families and friends; individuals who are paid to support them; and other citizens of our communities. As a part of our larger human services system, it both contributes to and relies upon continuous learning by all of us together.

[*] From Assistance with Integrity, John O’Brien and Connie Lyle O’Brien