So many great people do so many great things at DDA that it’s difficult to select specific projects to highlight, but this year we have launched a pilot project service that shows terrific potential.

Under the auspices of our Family Support program, our Seniors Outreach project is designed to support aging people with developmental disabilities who live with their more senior parents. Having had the experience of supporting adults who have been taken to the psychiatric unit after the death of a parent – losing their immediate family, their community contacts and home in the process – we decided it would be better to support the entire family rather than just the person with a developmental disability.

The median age in Canada currently sits at 40.6 years. 38% of Canadians belong to the Baby Boomer generation (people born between 1946 and 1965). The average life expectancy in Canada is 82 years – 80 years for men and 84 for women. It is easy to see why we are encountering challenges recruiting staff – they are all retiring! Because of Canada’s aging population, demand for caregivers overall will be increasing by 40% over the next 10 years, but net new entrants into the workforce for all occupations will only be 0.9%. With such a high number of old people, someone has to take care of them!

Estimates for the prevalence of intellectual/developmental disabilities in Canada range from 0.7% to 3%. Using rough estimates, there are about 50,000 people with intellectual/developmental disabilities aged 45 to 64 and about 11,000 aged 65 to 74 in Canada. These numbers are expected to double by 2025 (see “Seniors on the Margins”, Government of Canada). At DDA, we already have people who are over 74, living well into their 80s!

Most people with developmental disabilities in Vancouver and Richmond live with their parents. Many aging adults live with much older parents. The challenges that come with aging include increasing physical health problems – requiring more support than average – and aging people with developmental disabilities need even more support. With an overburdened health care system, seniors often need advocates to ensure they are receiving the services they need. Seniors are also increasingly prone to mental health problems such as depression, cognitive decline and the effects of using multiple medications, each with its own side effects. Six percent of seniors have Alzheimer’s or dementia and this number may be increasing in future years. 25% of people with Down syndrome aged 40 and over will show signs of early-onset dementia, and by the time they reach 60, this increases to 65%. People with Rett syndrome, Fragile X syndrome, Williams syndrome and other disorders are also at high risk for early-onset dementia.

Marginalization due to physical and mental health problems is a common challenge for aging parents and their aging sons and daughters who live with them, as is the lack of family or social support, reliance on public financial support (poverty), lack of affordable housing and a loss of independence. All aging adults are competing for public and private services in an exploding geriatric sector experiencing rapidly increasing demand and a decreasing public supply of dollars and professionals. There is a world-wide shortage of psychiatrists. Care givers will be ever harder to recruit. Families will also pay more for services like home nursing, home support and for long-term care, due to long wait-list for public funding.

As an aging Baby Boomer, this scenario looks pretty depressing, but there are methods to offset the effects of getting older. In the area of health, preventative routines like diabetic diets (they work for everyone), regular exercise (cardio), blood pressure management, vision/hearing aids, rest, recreation, limited alcohol/drug consumption, regular doctor’s check-ups and keeping up with social contacts can help us age more slowly.

These strategies also work for people with developmental disabilities. In the area of cognitive decline however, it is more important to get a cognitive baseline test between age 40 to 45, so suspected decline can be measured against these scores at a later date. Without these measures, it is hard to demonstrate that the individual is changing. Like the rest of us, people with disabilities need their lives to slow down to a speed with which they’re comfortable. Emerging technical solutions such as Life Alert bracelets, new wearable technology including Fitbits with heart monitors and other features, GPS systems for tracking wanderers, and remote monitoring for people, can assist those who may need emergency help but don’t need full time staff support.

At DDA we have many senior parents supporting adults who have been with us since they were children. Many of these parents lack family support, community connections or social contacts. Most have no plan for their son or daughter after their passing. Without planning, they risk passing away at home, only to be discovered by the person who lives with them – in this case, a person with a developmental disability. In one case in Vancouver, a woman lived with her deceased father’s body for four months before neighbours realized he had passed. Other folks that participate in our day programs have arrived at home and found their parent deceased, called 9-1-1 and found themselves in the psychiatric unit because first responders didn’t know what to do with them. Parents are generally unaware that their son or daughter will lose their lifelong roommate, home, family connections, stability and control over their lives in these situations, causing them high anxiety and trauma. Many families don’t have anywhere to go to alleviate their concerns about what will happen after their passing.

To address these challenges, the goal of DDA’s Seniors Outreach pilot project is to increase the time aging families can live together successfully. Our Family Support staff connect with the individual with a developmental disability and their family members to assess family capacity, parent health, abilities and needs. Then, they connect parents with any community and health services they need, or provide support directly, including offering tech solutions as appropriate. They connect both the individual and parent to community professionals as required. After they have developed a relationship with parents, staff encourage future planning that includes financial, housing and social support for their son or daughter, documented in an estate plan or will. They also develop a plan for the surviving individual based on parent and family wishes, directions, and in case of emergency, for first responders.

The benefits of this project have been numerous. They include:

  • Providing connections to community services that can support each person individually, and together with their family, to maintain or improve their health;
  • Helping parents provide input into a plan that will survive them and know that their son/daughter will be cared for after their passing;
  • Encouraging many parents to write their first will and plan their estates;
  • Providing regular contact and support to the family, decreasing social isolation;
  • Providing pre-arranged respite if a parent/caregiver needs surgery or is hospitalized;
  • Keeping families together longer;
  • Providing the individual with an emergency and long-term plan available for first-responders and relatives, including phone numbers for the people who should be notified;
  • Easing social isolation and supporting a big life transition for both parties;
  • Providing the individual who has lost a parent with a plan that involves their family, and includes a contact number to at least one person who can help implement their plan;
  • Allowing parents to rest in peace;
  • Negating the need for psychiatric involvement;
  • Providing CLBC planners and funders with an advance emergency and long-term plan so they know what to do to support the individual and can forecast future regional resource needs;
  • Saving money in expensive out-of-home service costs for the parent (long-term care) and individual (group home or home share).

Many of the people who we support have lived with their parents for over 50 or 60 years. They love and look after each other. They give each other’s life meaning. They have never experienced living alone. This is a very trying, confusing time for anyone, but for people with developmental disabilities, the death of a parent can seem like the end of the world. With a little support, planning and forethought, the situation can be tempered by sensitive supports and care provided by someone who they know.

DDA’s family support program and our technological innovations are not government funded, but CLBC Vancouver does pay for one staff member to make our current program possible.

Posted by dda-editor in: Star Newsletter