MIA’S SPACE: Why Are We Still Here?

By Pat Nobbie, PhD, Mia’s mom

It’s conference season. I travel the country and talk to families, people with disabilities, providers, and academics about what’s happening. This summer, the theme is social determinants of health – the impact that employment, stable, safe and affordable housing, peer support, access to healthy food, friends and relationships have on a person’s health.  

These are not things that have been typically included in health care plans, although it makes intuitive sense. How can you stick to a medication routine for asthma, or make it through chemo, if you don’t have stable housing? How can you manage depression or anxiety when you have nothing to do during the day? How can you build resiliency to changes in your life if you have no significant relationships? If you don’t have access to healthy food on a consistent basis, how do you manage your diabetes? Or your weight?

Health care is getting a social life. The medical/acute care world is branching out and realizing that the social aspects of someone’s life are intertwined with their physical and mental well-being and the well-being of their family. Figuring out how to integrate these aspects of life into reimbursable services is tough – and even more so under the threat of drastic reductions in public financing. I don’t have all the answers yet. Certainly, the goal is not “he who has the most services wins.” Charitable and faith-based entities can’t carry the whole load. And we cannot assume that families can manage it all – we have too many scary statistics on the economic costs to society for lengthy unpaid family caregiving. But certainly, we could remove barriers that prevent access to the diverse things that make up the community that supports us all, and among us, people with more unique needs.

Mia is present with me in all these conversations through our experiences of supporting her and how living space, employment and extensive social engagement has made her life in the community possible. Against the threat of our social safety net unraveling, we need to think about strengthening access to the community especially for those who have been
previously left out.

I’m at a loss for words. Or at least words that combine in theme and lead to a point that is related to Mia. I have a lot of words – about the anxiety many people who receive Medicaid are experiencing, about my experiences in the past few weeks, speaking at conferences to parents and their young adults, about employment mostly and hearing their stories. Like the autistic young man who worked very successfully in a public library in New York, and because of a change in his family situation, moved to another state to live with another family member. When he went to VR to find another job they referred him to Publix to bag groceries. He knew the Dewey Decimal system! 

Or the family whose 44-year-old daughter worked with a provider and a job coach to get a job at a theme park restaurant, but after four months was fired – turns out she wasn’t doing her restaurant work. But where was the job coach? And there was no communication with the employer or the parents. Or the mom with a 22-year-old son with learning disabilities who always wanted to work, had several good jobs, and just when he put money down on his first car, was transferred within a dealership to the garage after working on the floor, with no explanation, no transition and was fired when he expressed his frustration.

Is that enough words? After so many years of employment work, so much training, new federal policies that support work, a recovering economy. Why are we still here? 

Here are my top few recommendations:

• Use provisions in the HCBS settings rule to consolidate waivers, creating a menu of services and supports, and use individualized assessments and person-centered planning to help individuals or their representatives select from the menu. Families tend to be conservative and only take what they need. 
• Build natural supports into each person-centered plan.
• Expand shared living options.  
• Support PAID family caregiving.
• Expand participant direction, coupled with support for participants to manage their budgets.
• Increase support worker wages.  Turnover costs anywhere from $2500 to $5000 per employee, not to mention the effects of rotating staff on the people they support. Paid caregiving will be the fastest growing segment of the labor market to keep pace with the baby boomers who will need them. Who was that talking about job creation?
• Include small scale transportation innovations in infrastructure investment. The biggest barrier to people accessing their health care, employment, healthy food and social life is lack of transportation. Who was that talking about infrastructure?
• Focus on employment.
• Employ technology. New devices and apps should be more available to more people.

Each of these could be a whole column. Individuals with disabilities and their representatives know best what works. We must speak the truths we have learned to the new powers that be.

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