Frontline Initiative

New Hampshire Listens and Learns from DSWs

In 1991, New Hampshire became the first state in the country with a completely community-based developmental service system. Government officials, regional administrators, and state policy makers have all been praised and recognized for their contributions in the creation of this system. In contrast, little public attention has been given to those providing the day-to-day, person-to-person support and assistance that is the backbone of New Hampshire’s services. 

During 1995, in acknowledgment of its overdue debt, New Hampshire planned and held its first Caregivers’ Conference. Organizers and sponsors included the New Hampshire DD Council, the Association for Persons in Supported Employment, Arc ⁄ NH, Community Support Network, Inc., the University of New Hampshire’s Institute on Disability, the New Hampshire Bureau of Developmental Services, and the American Association on Mental Retardation ⁄ NH. The conference was designed to provide caregivers with:

  • A better understanding of state and national issues that affect individuals with disabilities;
  • Information about innovative approaches for supporting people with disabilities;
  • An opportunity to share their ideas, concerns, and dreams;
  • A relaxing environment where people could meet with colleagues, enjoy themselves, and recharge their batteries.

How Caregivers View Their Jobs

When asked to describe how they felt about their work, the overwhelming majority of caregivers New Hampshire Listens & Learns from DSWs Policy Initiative gave positive responses. When asked to use three separate words that best describe how they feel about the work they do, participants responded:

  • Rewarding (34)
  • Frustrating ⁄ Stressful (25)
  • Challenging (19)
  • Satisfying ⁄ Enjoyable (17)
  • Caring ⁄ Helpful (12)
  • Positive Adjectives: creative, valuable… (59)
  • Negative Adjectives: unappreciated, bored… (14)

When asked what things they most wanted to have continue, the caregivers’ primary concerns were for the individuals they served. One worker summed it up this way: “I want to continue, assisting people with their independent living; giving them the chance to live the life I take for granted.”

Talking about changes they’d like to see in their jobs, caregivers spoke of the need to place more importance on the person’s quality of life and less emphasis on meeting tasks and objectives.

Those providing direct supports wanted to be acknowledged and respected for the role they play in the service system. They wanted better pay, full benefits, and increased training opportunities. Caregivers wanted to be represented not only on the person’s planning teams, but also included in the agency’s decision-making process.

Incorporating Workplace Ideas

Caregivers were asked what it would take to implement best practices in care and support in their own agencies. They identified the following four necessary organizational changes.

Increased Respect for Individuals with Disabilities

Some suggestions included:

  • Administrators need to get a taste of the reality and issues for both consumers and staff.
  • Consumers must be provided with as much information as possible so they can make informed decisions about what happens in their lives.

Include Caregivers in the Decision Making Process

Some recommendations included:

  • Invite caregivers to serve on all relevant committees and teams.
  • Have a committee of employees meet regularly with directors and other administrators.

Increase Training Opportunities

Some of the requests included:

  • Let agencies know that more conferences and workshops for the direct caregivers are needed.
  • Use experience of caregivers as trainers.

Focus on Quality of Life

Some recommendations included:

  • Make the person’s quality of life the service system’s first priority.
  • Learn as much as possible about the person being supported, and create a unique environment that works for that person.

Adapted from Listening to New Hampshire’s Caregivers by Susan B. Covert.