What this means for people with intellectual and developmental disabilities in WA State

What if you needed help with personal care (bathing, using the toilet, hygiene)?  That alone can be very overwhelming.  Now think about having a person you initially have no relationship with, or have never met come to your home to assist you with these intimate tasks.  Now, imagine that every few months the person who provided this care changed - the person you established a trusting relationship with had to leave.  Often, you may not know the people very well that is helping you use the toilet, bathe, shave, or brush your teeth.  They may not have sufficient past experience in this type of care, and are learning how to do this for the first time. Maybe you do not like them.  The previous person might have been someone you grew close with, or who you trusted.  Maybe you came to think of this person as a friend and a family member.  But they are gone, forced to leave because they cannot provide for themselves or their family on the wag they earn  and you will probably not see them again…and here comes someone new.  

This is just one example of the challenges many people with intellectual and developmental disabilities face on a regular basis.  Now think about every task you do throughout your day, your week, your month, and needing help from another person to accomplish some, or all of these things.  There is always someone in your home who does not live there.  There may be two or three staff there at one time.  And often times, there are unfamiliar faces – your new staff.  How do you feel each time you have a stranger in your home?  

For individuals with intellectual and developmental disabilities who require consistency and continuity of care, a turnover rate of nearly half of their direct support staff in any year is disruptive; it does not allow for relationships to form and quality supports to be maintained.  Consistent long-term staffing is essential to serving people with complex support needs.

What does it mean for families?

Family members have placed their trust in supported living providers to make sure their loved ones receive the assistance, care, guidance, and support they need.  Often times, family members form close relationships with DSPs – they can feel more at ease knowing proper care and support is being provided, allowing them to focus on being parents, siblings, grandparents - not just advocates and overseers of services.  When a trusted DSP leaves, it can have a lasting impact on families too.

Many families must wait...and continue to wait to access supported living services for their loved one while they provide care.  Some families have a member residing in an Residential Habilitation Center and want to see them transition into the community. This can be quite stressful - there may be no community based services available for a long time.

What does it mean for DSPs?

Providing direct care to people with developmental and intellectual disabilities has ups and downs as any job does. However, being a DSP it is very different from typical careers.  It can be physically hard work, emotionally draining, clinically & medically complex, and in some cases DSPs are tasked with implementing complex behavioral  support plans to ensure the health and safety of the person they support, the community at large, and themselves as well.

Being a DSP can also be the most rewarding, worthwhile, and fulfilling work someone can choose to do in their lifetime.  Many direct care staff form strong relationships with the people they support – they love their jobs, care greatly about the quality of another person’s life, and are willing to endure the challenges to have a positive impact.  Some DSPs treat the person they support like family – they may bring them to family celebrations, introduce their children, have meals together, or go on special outings.  

All too often, these dedicated compassionate people are forced to leave a job they love, and a person(s) they care about, because they cannot afford to continue this valuable work.  Many DSPs want to provide supported living services, but must choose between their family’s needs and their job as a DSP.  They must make a hard decision to pursue higher paying jobs – many of which are easier, with lower expectations, and fewer demands.