This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.
Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years. The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised. We had frequent contact, outings and visits both at our home and his. Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.
I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive. I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania. I remember expressing my great concern regarding his increasing mania to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.
This Thanksgiving, our son was a totally different person. He was at our family home for at least 4 hours and stayed focused and helpful. His participation in meal prep and tasks was amazing. He even sat at the table and ate a nice sized meal. When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.
I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates. This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services. My son has greatly benefited in so many ways and in such a short time.
Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed. It was great to see these changes and work with this team to create solutions that worked. But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.
Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks. He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer. He is becoming more self-directed in being able to communicate his needs and desires.
We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living. Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers. We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.
Some supported care agencies are experiencing staff turnover rates of 50-70%. This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers. Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.
Supported living is in crisis. Funding for direct care staff has been ignored for years while costs have continued to increase. The level of intensity of staff support is increasing and we need to provide the appropriate staff. This level of care is critical to many in our community to enable them to have a meaningful life experience.
A meaningful life is more than just having support staff in your home though. It is being able to go out and be in the community. Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments. Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing. We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But, unless an agency is able to fund raise for these critical necessities to a meaningful life, the clients will go without.
In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. . My son has a job at Lowe’s working 2 hours each weekday morning (supported employment provided by PROVAIL). and needs transportation to and from work . He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week. Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.
It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.
Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort. We, as parents, guardians, residents, community members and staff, can make a real difference. We can adapt to changes better and address issues directly when they arise. There is more control over one’s life. We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.
Below are some suggestions for what you can DO to help make someone’s life better:
- Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.
2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.
Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:
(for clarification on the RN – this amount has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)
If you would like to donate to Alpha Supported Living Services you can reach them at
16030 Juanita-Woodinville Way NE
Bothell, WA 98011
t 206 284 9130 | f 425 420 1133
Please join me in making a monthly donation to Alpha Supported Living Services – it WILL make a difference in someone’s life!