Care crisis gets attention

Minnesota’s care catastrophe is finally getting the media attention it deserves. And it is about time. News stories statewide have […]

Two hands touching

Minnesota’s care catastrophe is finally getting the media attention it deserves. And it is about time. News stories statewide have described people stuck in hospitals and care centers because there isn’t staff for them to go home. It is an unacceptable situation and needs all of the attention it can get.

For years, Access Press was a lone voice in the wilderness on this important issue. That was thanks in large part to the late Tim Benjamin, our executive director and my newsroom colleague and friend.

Tim was quadriplegic and needed 24 hour care. I often note that in our years of working together, his care situation changed greatly. It didn’t change for the better.

I used to know all of Tim’s personal care staff – not just by names but by what was going on in their lives. I knew who had a family and children, and knew what family members were doing. I knew who was going to school to become an LPN or physical therapist, who was saving up for a car, who was applying to community college and so on. They were our colleagues in the Access Press office because they met Tim’s needs and allowed him to fully participate in work and the community.

Over time that changed. We saw so much more turnover in the staffing ranks. We also saw changes in training and capability. I remember Tim interviewing someone for a post and asking what the average human body temperature should be. The job candidate answered, “117.” I may have asked Tim later if he planned on having a hot time in the old town tonight (or some other snarky response) and he just shook his head.

We coworkers of Tim didn’t know if we’d have the good PCA in the office with us or if we’d be dealing with the fellow who stole our vacuum cleaner. We didn’t know who’d be showing up day to day. Then we didn’t know if Tim could show up every day.

The times of knowing who was on which shift faded into memory.

I would find myself waking up PCAs because they were exhausted and sleeping from working three jobs to make ends meet. I would have to work with loud online games or loud phone chatter on the other side of one wall because PCAs didn’t know or didn’t want to know how to act in an office setting.

Tim in his later years struggled due to care crisis. So have many others. And while the increased media attention is welcomed, we need results from it. The situation for too many of us is becoming dire.

Register for training

PACER Center’s training for parents is coming up in March. The deadline to register is February 24. This is helpful training and space is limited.

According to PACER, this is not training for parents interested in learning to advocate for their own child.  The training is for parents interested in taking their advocacy to the next level and advocating for systems change for all children, youth, and young adults with disabilities.

Applicants must be the parent of a child or young adult with a disability who is 5 to 20 years old and currently receiving special education services on an IEP in the state of Minnesota. Training is virtual and those chosen are expected to participate in both sessions: 9 a.m. – 1 p.m. Friday, March 10 and 9 a.m. – 1 pm Friday, March 17.

More information on registration can be found here:

Need warm thoughts?

Summer means camp for many of us growing up, and accessible camps provided experiences we could not get elsewhere.

MNCDD, our partner for our monthly print History Note, has shared a great history for anyone interested in the disability camp experience in Minnesota. Dr. Bob and Sue Erickson met at Camp Courage during the first year of camp (1955-1956) where they both worked as camp counselors.

Some might remember Sue as Sue Jambeck. She is the daughter of the late Toy Jambeck, the first director of Camp Courage. The Jambeck-Erickson wedding was the first one performed at Camp Courage. The couple has been passionate supporters of Camp Courage and in recent years have been dedicated to sharing the history of Camp Courage and its importance to people with disabilities and those who worked at the camps in its early years. Go to:
  • Work with your care provider to stay healthy. Protect yourself. Vaccines are your best protection against being sick.
  • Wash your hands! Hands that look can still have icky germs!

You are not alone. Minnesota Autism Resource Portal.