When It Comes to People Like My Daughter, One Size Does Not Fit All, New York Times, July 4, 2021, by David Axelrod
I am profoundly grateful for the disability rights movement that has waged a decades-long battle to shutter such institutions, many of which were run by the states, and to win for people with intellectual disabilities the right to live in small apartments and homes with services in residential neighborhoods.
But now the ideal has hardened into dogma: All larger communities are bad. All small, neighborhood-based group homes are good.
Of course, neither of these things is true, and the rigidity of that thinking denies the simple truths that there are good and bad places, large and small, and people with disabilities are not all the same. Like anyone else, they have different personalities, capacities and preferences.”
By Allison K. Hoffman, J.D.
I was touched by this op-ed by David Axelrod and his ability to illustrate pointedly why we need various options to meet the range of possible care needs of people with disabilities of all ages, through a telling of his own struggles to find the right support for his daughter, Lauren, who has suffered from debilitating and disabling seizures for decades.
As I discussed in my last post, Medicaid’s pendulum has swung from favoring long-term care in institutional settings to spending a majority of long-term care dollars in home-based settings. Underfunding care in home-based settings has increased reliance on friend and family as informal caregivers and as financiers of their loved-ones care (whether through dollars spent or hours spent and lost opportunities).
With the problems COVID-19 highlighted in congregate care settings, like nursing homes, some have doubled down on calls for shifting care home and dismantling care institutions, rather than making them better. Axelrod talks about a similar push that began during the mid-20th Century deinstitutionalization movement. What he does not note is that during that movement, some families who were unable to care for loved ones with disabilities at home abandoned the legal efforts when they realized that the end goal of the litigation was to shut down institutions, not to improve them. Elsewhere, I’ve advocated for why in this moment we need to keep nursing homes, other congregate care facilities, and larger living communities, and make them better.
One part of this effort is regulatory. Another is funding. A final one is designing flexible policies, what I’ve called a policy toggle. Public financing for long-term services and supports should be designed so that people can get care at home, when it makes sense for them and their loved ones. When it doesn’t, like in the case of Lauren Axelrod, they should have the option of care in high-quality and affordable community-based settings. Too often policies have been designed with a bias in one direction or another, rather than letting people who need care, in conjunction with their loved ones, figure out the right direction so that everyone can thrive.