Evaluation of the Neurodegenerative Conditions Coordinated Care Program (NCCCP) in Western Australia: Barriers to better service provision

Abstract

This paper details a 2009-2010 evaluation of the Neurodegenerative Conditions CoordinatedCare Program (NCCCP) commissioned by the Disability Services Commission (DSC) in Western Australia (WA). The program, run by the Multiple Sclerosis Society of WA (Inc.) provides in-home care and supports and respite for people who are under the age of sixty-five and diagnosed with a rapidly degenerative neurological condition. In 2009, the identified barriers to the better provision of services included: shortage of quality out-of-home respite providers, and convoluted paperwork requirements to qualify for the program. Some service providers were unaware of the program and so were not referring them into the NCCCP, a number of service providers were unwilling to refer their clients into the program, neurologists were unwilling to give a final diagnosis for a client, that would enable them to qualify for the service, there was a general lack of knowledge about what services were available in the general community, and existing equipment pools were under-resourced. In 2010, the study found that most of the issues had been addressed however, out-of-home respite services were still very limited especially in rural areas, and the eligibility criteria for entry to the program is confined to those 65 years and under. This paper discusses the issues that still remain with the program as examples of barriers to better provision of services.

An Investigation of Perspectives of Respite Admission Among People Living With Amyotrophic Lateral Sclerosis and the Hospitals That Support Them

“…Home care for patients with ALS often decreases as the disease progresses. 8,11,13,[19][20][21] This results in a greater care burden 4,22 and affects patients' future planning. 23,24 Respite admission is therefore important for severe-stage ALS patients.…”

Transitions between SNF and home-based care in patients with multiple sclerosis

“…The goal of long-term home health care (e.g., for wheel-chair bound MS patients) is to maintain the patient's highest level of functioning, as well as to facilitate the patient's ability to live with his/her illness and disability. In general, studies from other countries have demonstrated that while home-based services do not reduce disability in MS patients, they improve their quality of life and provide respite to family members (Dunn, 2010;Mutch, 2010;Bahn and Giles, 2012;Giordano et al, 2013). Our understanding of long-term care needs of the MS population and how these needs are met by the avail-able care options is limited.…”