NURTURING ASSISTANCE: Support for Parents with Disabilities

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In 1988, a Toronto couple who had just had their first child realized that a special service was needed for the mother, who has a disability and needs attendant services, to help with child care and other parenting activities. Physical supports would enable her to make a meaningful contribution to raising her child and help strengthen the mother-child bond. This was especially necessary during the child's developmental years. The mother termed this support Nurturing Assistance, a totally new concept. It is a concept of support that has become increasingly important over the past decade, as more people with disabilities are deciding to raise their own families.

Nurturing Assistance is a consumer–directed service providing physical assistance to parents with disabilities who have young children. Its function is to help parents care for their child(ren) like any other parent, and it is typically used during the child's first eight to ten years. Nurturing Assistants are not babysitters or nannies, nor are they volunteers or family members. They are paid employees who work under the direction and in the presence of the parent. They assist with activities such as bathing and changing the child, preparing meals, lifting, carrying, nursing and cuddling, playing and parent–child interacting.

In order to understand Nurturing Assistance, it is essential to grasp the concept of self-directed attendant services. In Ontario, these services are defined as consumer-directed physical assistance with routine activities of daily living which the person with a disability would do him/ herself were it not for physical limitations. It is provided by another person, namely the attendant, who acts as the consumer's arms and legs, and helps them to get up and dressed, have a shower, transfer in and out of a wheelchair, do bowel and bladder routines, and prepare meals. They may do light housework, grocery shopping and laundry. Attendant services are consumer-directed, meaning that the consumer takes responsibility for decisions and training involved in his/ her own assistance.

In extension of the concept of attendant services, the Nurturing Assistant is an attendant who acts as the arms and legs of a parent with a disability in performing daily child care and parenting activities. It is also consumer-directed, and the parent remains the responsible caregiver when working with a Nurturing Assistant.

There are currently two avenues through which a limited number of parents have successfully obtained Nurturing Assistance in Ontario. One is through the Direct Funding Program (DF). Through DF, consumers receive funding from the Ontario Ministry of Health to hire, train and pay their own attendants. Consumers with young children have been able to allocate some of this funding to hire Nurturing Assistants. The other sources are certain Ontario Attendant Service Projects and Outreach Programs that have arranged to receive government funding to provide Nurturing Assistance to the consumers with whom they work.

It has been almost 13 years since Nurturing Assistance came into existence and it is still not widely known, even among service providers. It is generally discovered through word of mouth. Parents who are receiving this service have had to find the service, or advocate for the service, on their own. Due to this lack of awareness, there is limited access and availability of this type of support.

People with disabilities who do not use attendant services often find they need assistance following the addition of a child to their family. For example, a father with muscular dystrophy may be independent with self-care but cannot lift, change or feed his child without assistance. Many parents with disabilities are in this group but, at present, there are no mechanisms to fund or provide Nurturing Assistance to non-attendant service users.

Responding to the need for greater awareness and clarity of this increasingly important service, Centre for Independent Living in Toronto started the Nurturing Assistance Project in August 2000. Led by an Advisory Committee of parents with disabilities and service providers, the goal of the project is to create a model that can be used by parents, service providers and funders to develop and implement Nurturing Assistance services. The guiding principles for the development of this model are consistent with the principles promoted by the Canadian Association of Independent Living Centres—consumer control, peer support and full integration.

Through interviews with parents and prospective parents, service providers and other key informants, the project will document the extent and type of parenting supports and/ or Nurturing Assistance services that are currently available in Canada and internationally. It will also outline the process consumers might follow in planning and obtaining such services, and provide stories and advice from current users based on their own experiences. The resulting guide book will be published in September 2001.

Mary Ocampo is Project Coordinator for the Parenting with a Disability Network at the Centre for Independent Living in Toronto (CILT).
She can be contacted by phone: (416) 599-2458 ext 26; Toll Free in Ontario: 1-800-354-9950; by e-mail: pdn@cilt.cnd.com