Parenting is Hard

Parenting is hard.

Parenting a child with intellectual/developmental disabilities and mental illness is, in my opinion, harder yet.

Years ago I worked at an agency that provided services to individuals with disabilities. I worked in a management position. I was drawn to this position because I am the parent of a child with disabilities.

And also because it provided group health insurance. Our family bought personal health insurance because me and Tracy both owned our own businesses and were not members of a group plan. The company that provided our personal plan rejected Travis because of his diagnoses. We had to buy him a plan from CoverColorado for people that were hard to insure. It was an expensive plan that didn’t cover basic needs, mostly just catastrophic events. CoverColorado ended operations when the Affordable Care Act was enacted.

The single most difficult problem the agency faced was staffing. The lack of employees and the resulting overtime costs. The cost of training new employees to be effective caregivers. Again and again because of the high turnover rate. This was fifteen years ago.

It’s even worse today.

I remember a mom coming into my office to complain about the agency’s high turnover rate and the effect it was having on her adult child. A child that lived in one of the agency’s group homes. I heard her. My heart hurt for her. I knew that this was going to probably be an issue we faced when Travis became an adult.

I shared with her that I had a child with autism and an an intellectual/developmental disability. I also told her that taking care of his needs was the hardest thing I have ever done. She agreed and told me she felt the same way. I shared with her that it was extremely difficult to find and then maintain an employee to work for close to minimum wage to do the job we agreed was the hardest thing we have ever done.

The rate an agency in Colorado can pay an employee is based on the reimbursement rate from Medicaid. When I worked with this agency fifteen years ago they operated thirteen group homes. Over the years the group homes were closed as it cost too much to staff them.

Today, in Colorado, the model is that an adult with disabilities either lives with a caregiver in their home (host home) or they live in their own home with direct care support (supported living services). Supported living services is the support that Travis receives. Or should be receiving.

Occasionally an agency can find a long term employee. Oftentimes these employees grew up with a loved one with an intellectual/developmental disability. These employees have a heart for caregiving. And usually a spouse that is “the breadwinner”. Even if you like your job, the pay is a problem.

Each year Travis’s team has a Service Plan Meeting to budget his needs into the amount allowed on his plan. The idea is to help him to live as independent a life as possible. Travis is part of the discussion. The agencies that are currently providing services to Travis also attend this meeting. Travis needs help with cooking, cleaning and keeping up his home. He also needs mentoring and help participating safely in the community.

One by one over the last eighteen months, Travis’s providers have moved on to different jobs or moved away from the area. The last provider he has left is working her last day tomorrow. With only one week’s notice.

The current agency has difficulty finding replacements because of staffing issues. Travis’s case manager has sent out requests for services to all of the local agencies without any response. Because of staffing issues.

I read an article on www.usnews.com that was written by Andy Miller and produced by Kaiser Health News, “Staffing Shortages Undercut Caregiving Industry for Those with Disabilities”, that sums it up well:

“Group homes and facilities that serve people with intellectual and developmental disabilities were hurting for staffers before the pandemic. Now the nationwide job crunch and pandemic pressures are making it even worse. Even before the pandemic, the nation had a shortage of direct support professionals working in private homes, group facilities, day programs and other community settings.

Fears of contracting COVID-19 at work in the pandemic have made the caregiver staffing problem worse. Persistent low pay amid a tight U.S. labor market makes it that much harder to attract workers.

The shortage is at an ‘epic level’, said Elizabeth Priaulx, a legal specialist with the National Disability Rights Network.”

Our family is dealing with that “epic level” on a personal level. In many of these cases family members are having to fill the gap. I feel like I am fighting a losing battle trying to keep up with Travis’s cooking and home care needs on top of his personal needs.

Agencies are just not able to compete with businesses paying $15-$18 an hour. Even with a temporary enhanced Covid-19 rate.

The inability to bring on new staff increases the workload for the remaining staff. Which in turn makes them want to find another job.

Per the article, “In 2019, before COVID erupted, the direct support professional turnover rate was 43% nationally, according to the National Core Indicators collaboration of public developmental disability agencies. In a 2020 survey of providers by the American Network of Community Options and Resources, two-thirds of service providers said they were turning away new referrals. Since staffing shortages became a problem, 40% saw a higher incidence of events that could harm a person's health or safety.

And a KFF (Kaiser Family Foundation) survey released last month found that during the pandemic, two-thirds of responding states reported a permanent closure of at least one provider of Medicaid-covered home- and community-based services.”

In July 2021 the Colorado General Assembly authorized funding to take 667 Medicaid IDD clients off the wait list. Our county received 41 of these allotments. This is good news for individuals needing services. But it puts additional pressure on staffing the needs of individuals receiving services.

Our goal has been to schedule providers so that we have someone spending time with Travis on a daily basis. This helps to keep the riff-raff from hanging out at Travis’s house. Tracy and I have been stopping by Travis’s unannounced each time we are in town. In doing so, we have found strangers sleeping on Travis’s couch. In the middle of the afternoon. They tell us that they are just there to hang out with Travis. Only they are sleeping and he is playing X-Box in another room.

Travis agrees that he does need a live-in aide again. He seems to be overwhelmed by these individuals making themselves at home in his home. They cook and eat his food, leaving the mess for me to clean. He also seems overwhelmed by their need for him to be their personal driver. Without making any contributions of gas in his tank. It seems as though once a new person finds their way into his life, along comes a slew of their needy friends.

Travis knows no strangers, and is unable to say no even when he is overwhelmed.

Travis’s safety is a major concern. He needs an aide to lock his door at night and to make sure that people that don’t have Travis’s best interests at heart aren’t “hanging out”. To make sure he takes his medicine when he doesn’t hear the alarm. To make sure he goes to bed and uses his BiPap instead of falling asleep in his recliner and stumbling into bed at all hours.

We are not the only parents having to fill in the gaps. As hard as it is for us, it is even harder for some parents. Some are much older. Or in some cases both parents work full time.

Per the article, “Aging Caregivers of Children with Disabilities Pushed to the Breaking Point”, by Vanessa Milne, Sachin Pendharkar and Maureen Taylor, “Many adult children with disabilities now live in the community, and are likely to outlive their parents. The push for home care over the past several decades has allowed people who might previously have lived in institutions to stay at home, most notably people with developmental disabilities.

This is a positive shift, as community-based care is more cost effective than institutions, and it’s also preferred by people with chronic health conditions or disabilities. But major cracks have appeared in our system, with clients not getting enough access to respite, supportive housing or home care hours.

In many instances, family members have stepped in to fill the gaps, so what happens when we all cross that bridge – when those caregivers, many of whom are Baby Boomers, become too old to continue to look after their adult children?”

Families have waited or are still on waiting lists for several years. It’s a blessing when their child’s name reaches the top of the list and is approved for services. And a curse when staffing issues means that they will have to continue to fill in the gaps. The current staffing issues are creating a challenging workforce situation.

It is stressful for parents of children with disabilities to deal with the uncertainties. Families are stretched thin. Cracks in the system need to be addressed as parents are at their breaking point.

Per the Kaiser Health News article, “Through the recently passed American Rescue Plan Act, the Biden administration has recognized the wage gap for direct care workers by adding more Medicaid funding to help compensate them for their work. The act increases the federal matching rate for state spending on home and community-based services by 10 percentage points from April 1, 2021, through March 31, 2022. It requires states to submit spending plans for those funds.

Parents of people with disabilities, though, have concerns about the future viability of the services if the national worker shortage isn't fixed.”

Recognizing there is a wage problem for direct care workers is a great step. Increasing Medicaid funding through March 31, 2022 is a great step. But what happens after that?

After tomorrow Travis does not have a single provider to help provide for his care. I texted Travis’s case manager when I received the notice. She texted me back, “So that leaves literally no one for Travis.” (Meaning to provide his home and personal care.)

To which I responded, “Except me.”

Did I mention that parenting is hard?

"Friend: What’s parenting like? Me: You know all the side effects they list on prescription drug commercials? It’s like that. - Difficult Mommy

“What it’s like to be a parent: It’s one of the hardest things you’ll ever do, but in exchange it teaches you the meaning of unconditional love.” - Nicholas Sparks