Rare Disease Group Home

Rare Disease Group Home, a Supported and Independent Life

In 2008, in order to help rare disease patients of all ages live a quality life, an 
innovative pilot program was introduced to patients. The Rare Disease Group 
Home aims at achieving a complete care service network for the rare disease 
patients in Taiwan. The plan is to establish 4 Rare Disease Group Home across 
Taiwan within two years, aiming to meet the needs of those who are ill but still 
capable of partial self care with facilitation. According to the statistics in TFRD, 
of those who are in need of long-term care, among the 48% are cared at home, 
52% are looked after by families. The patients’ reluctance to leave home indicates 
that maintaining the family as whole is still highly valued in Taiwanese society. 
In this case, sometimes proper care is not available because of a number of reasons, 
such as low family income, aged caregivers, untrained care skills, or more than 
one patient in the family. 

Therefore, base on distinctive needs of rare disease patients in Taiwan, the primary 
goals of the program are to assure the care quality provided to the patients and to 
maintain the warmth and functions of family. Also, through mutual help, the setting 
of the pilot group home program is expected to reduce both the pressure of caring 
patients and earning living and to better use resources of different families. By 
arranging 3 patients living together and a hired full time caregiver in facilitation 
with various supports and services provided by TFRD and a case manager in 
coordination, the first group home will be established in mid February in Taipei 
County. Lodging and subsidy to maintain livelihood are provided. As to the families 
of the tenant, they have consent to take turns staying with them on evenings and 
weekends as the precondition. In the group home, patients and their families can 
have independent living but at the same time can look after each other.