Home support services: A situation requiring urgent action

The complaint

A user with amyotrophic lateral sclerosis contested the lack of access to home support services due to insufficient funds in the intensive home support services program (SISAD).

The life expectancy of a female in her 50s who has this disease is three to five years. The user is currently living at a rehabilitation centre but wants to go home. She is wheelchair-bound and needs help with all her activities of daily living.

The woman’s spouse was having their home adapted to make it accessible to the user under the Residential Adaptation Assistance Program. However, the user also needed home support, so she applied to the health and social services centre (CSSS) in her region.

Her needs were assessed and the SISAD committee approved her application but informed her that she would be put on a waiting list because the budget was depleted.

The investigation

• When the user filed her complaint, she had been given a diagnosis eight months before.
• According to the local service quality and complaints commissioner, because of the home support program’s budget shortfall, the CSSS had had to implement severe budget-cutting measures. Pending the availability of extra funds, there were no intensive home support services for new applicants.
• The user had no choice but to remain at an institution that specializes in active rehabilitation even though she hoped to return to her natural living environment where her spouse could give her the care and help she needed with assistance from the CSSS.
• At the time of the investigation, there were 86 names on the SISAD waiting list. Managing this list is complex because it involves collating applications from three of the CSSS’s local community service centres by taking into account priorities and the chronological order of the applications.
• The waiting list management tool, developed by the CSSS, looks more like it was designed for budget management than for determining the intensity of users’ needs and the services required.
• First-time SISAD applicants are assessed using standardized tools, but are offered a "potential" individualized service plan (ISP) and told that they are on a waiting list because there are not enough funds to update their ISP.
• The "potential" ISP is a snapshot of the number of hours needed to meet applicants’ disability-related needs, but it does not factor in the contribution of natural caregivers or community resources in helping users remain in their home.
• The "real" ISP can differ markedly from the "potential" ISP: users who are heavily dependent on others for their needs and live alone and those who live with a spouse actively involved in meeting their needs and are surrounded by a helping community have different service needs, and therefore, a different ISP.
• The CSSS says it manages the waiting lists dynamically and even if there is no budget increase, throughout the year they regularly re-assign the service hours that become available through attrition (e.g. moves, placement in a residential resource). However, in the meantime, there are undue re-allocation delays because of the cumbersome administrative mechanisms in place.

The Québec Ombudsman’s conclusions

With a view to improving the quality of home support services delivered by the health and social services centre, the Québec Ombudsman recommended that it:

• review how it manages waiting lists so they reflect the intensity of the services required and the number of hours that should be allocated in response to assessed needs;
• take the appropriate measures to ensure that when the assessment process begins, users have all the information required for them to make informed choices and help to put together their ISP;
• within 30 days of receiving these conclusions, review the administrative mechanisms for allocating service hours to users who are on a waiting list and take the required measures so that any available hours are re-allocated.

The health and social services centre agreed to act on the Québec Ombudsman’s recommendations.

Furthermore, given the rapid progression of the user’s disease, the CSSS considered that urgent action was required. Since the user’s spouse agreed with her choices and was offering his entire collaboration, and work to adapt the home was almost finished, it decided to bend the rules and update her service plan.

The result is that the CSSS committed to providing 35 service employment paycheque hours once the adaption work was completed. Although the 35 hours were only part of the services hours required, all of the user’s needs in terms of her daily activities and part of her domestic help needs would be taken care of.

The user is satisfied with the CSSS’s commitment and is confident that she and her spouse can organize the services so that she can live at home completely safely.

If you are interested in the subject of home support, see the investigation report entitled Is Home Support Always the Option of Choice? Accessibility to Home Support Services for People with Significant and Persistent Disabilities.