Medical mothers wear many different hats. We are therapists and nurses and referees and dieticians and housekeepers and laundresses.
One of the many hats I wear is journalist. Another, lately, has been political activist.
Last Monday, Feb. 6, I wore that latter hat to a hearing of the Oregon Senate Committee on Human Services. The committee was hearing testimony two bills that could lead to paid parent caregivers in our state. The first, Senate Bill 646, is a broad measure, developed by Sen. Tim Knopp of Bend in partnership with parent leaders. The second, Senate Bill 91, was written by Sen. Sara Gelser Blouin of Corvallis, who has deep roots in the disability community. S.B. 91 has the most chance of moving forward this session in the Oregon Legislature. There are many things I would like to see changed in the bill, particularly the program’s restrictive design and the reporting requirements that ought to capture the full cost savings of such a program — so that it can continue long into the future.
Longtime readers of Medical Motherhood may remember that, in the first year of this publication, I wrote a lot about the economic and systemic burdens of raising disabled children.
I strongly believe that parents should be eligible for caregiving jobs for their minor disabled children. When that belief motivated me to take political action, I stopped reporting about it in this newsletter. I was unclear on the ethical implications of doing both so I tried to separate them.
I must have forgotten that I started this newsletter as a celebration and examination of the reality of being a whole human who raises disabled children — not just the inspirational part, not just the difficult part; not just the supermom part, not just the welfare mom part. Every single part.
The truth is that sometimes in advocating for our kids or meeting their needs, we sometimes have to color outside the lines. So it was that I found myself presenting to the Senate Human Services Committee on behalf of Advocates for Disability Supports, the grassroots group of motivated and intelligent parents who have become my friends as we fight for this cause.
My testimony focused on the advantages of paying parent caregivers with Medicaid funds: the quality of their care and the likelihood of savings in other areas of government. Some of it is specific to Oregon, but those of you in other states could probably find similar statistics for your state. (Honestly, this stuff is so complicated I could write about it for a month of Sundays.)
Because of the Centers for Medicare and Medicaid’s flexibility on this issue during the COVID-19 public health emergency, programs across the nation are currently trying to decide whether to permanently allow parents to be paid providers. On March 8, the Lucile Packard Foundation will host a national webinar to discuss the subject. I have talked to people in Washington, Idaho, Iowa and beyond who are trying to get new rules or legislation to allow this in their states. If you want to join the effort, reply to this newsletter or apply to join Allow Oregon’s Disabled Children to Have Paid Parent Caregivers on Facebook.
Here is a condensed version of my testimony for you, Medical Motherhood readers:
Calypso Vander Velden.
These are the children of leaders in this grassroots effort who have died, just in the last year, as we have been fighting for paid parent caregivers. The issues our community faces daily are as real as it gets. We honor their memories by speaking their wishes for a paid parent program.
My son is one of the few hundred Oregon children who benefited significantly from the temporary emergency program. But I’m really here for dozens of people who have come to me with stories of how this program transformed their lives and the lives of their children — from surviving to thriving.
On May 11, when the federal public health emergency expires, many of them will go back to drowning and their suffering will go back to being invisible. We have to make noise while we still can.
The advantages of paying parents for the extraordinary labor they provide these extraordinary children are not theoretical anymore.
We did it.
For the last two years, Oregon disabled children were saved from poverty and from unnecessary foster care, group home and crisis care placements. Under the care of their best-qualified caregivers, disabled children grew, stabilized, and learned new skills. Disabled children stayed out of the hospital, stayed off ventilators, stayed alive.
This is a simple idea. It does not need to be so complicated.
[…]When considering aid to the vulnerable population of children with complex care needs, we musttake into consideration the variety and overlapping nature of different silos of government. The National Center for Complex Health and Social Needs has sharply criticized government programs for not recognizing their collective impact on the end user. They wrote: “Our health and social systems typically focus narrowly on an individual’s single need and are not designed to work together to address multiple needs, often leading to costly and avoidable care. Many causes of poor health are best addressed through non-medical interventions that require cross-sector and community collaboration.”
This is what parents do every day for their children.
[…]We believe that paying parent caregivers to provide care for minor disabled children would be cheaper for the government and more effective overall.
Foster care for I/DD children costs about $70,000/yr per case. The 135 children in 24-hour residential homes have a total annual cost of $30.6 million, or about $24,000 per month. Providence Child Center — which has been very difficult to access lately as there are no spots, no safety net — costs the state $17,000/month or more than $5 million/year for 27 children.
[…]In the written fiscal analysis, we’ve listed many ways that a paid parent caregiver program could save money in other programs: SNAP and utility assistance, lower healthcare costs for both children and their caregivers, increased productivity and better trajectories, better K-12 outcomes and an economic generator with the 2:1 matching dollars. Somehow this state can afford money going every which way in the NAME of our kids but not to the people who are ACTUALLY doing the work.
[…]It is not a mystery why these families are impoverished.
There are only so many hours in a day.
And our children need help…
…that only we are providing.
You can watch Advocates for Disability Supports’ full presentation at on the committee’s website, starting at 24 minutes.
I highly recommend watching the entire hearing for amazing testimony from many wonderful families. Oregon’s temporary paid parent program has been operating for two years and participants said they have seen incredible changes in their children.
And if you want to hear even more, check out the interview I did this week with Lisa Tschudi for her Love Doesn’t Pay the Bills podcast. It will be out on Tuesday.
Medical Motherhood’s news round up
Snippets of news and opinion from outlets around the world. Click the links for the full story.
• From Disability News Service: “Neurodivergent parents ‘often blamed for behaviours of autistic children’, says report”
Neurodivergent parents and single mothers are frequently blamed for the behaviours of their autistic children, and even subjected to safeguarding inquiries, when they try to seek support from services, according to new research.
The report, based on a survey of more than 1,000 families of autistic children, shows a “very real fear” among neurodivergent parents about disclosing to social services and other professionals that they are themselves autistic.
The findings suggest that safeguarding procedures, which can even lead to the child being placed in care, or a criminal investigation into the family, are more frequently being taken against lone mothers and neurodivergent parents than other parents surveyed.
Some of the parents who took part in the survey said their children had died while in inappropriate placements.
The authors say the blaming of parents for the difficulties their children are experiencing at home or school is a “widespread phenomenon” and appears to be “a systematic way of dealing with parents seeking support” from school staff.
They say it has created “a climate of real fear among parent carers”.
The report, Parental Blame and the Pathological Demand Avoidance Profile of Autism, focuses on the experiences of parents with autistic children who are believed to have pathological demand avoidance (PDA), which “presents as an anxiety-driven extreme avoidance of everyday demands, and a need for control which permeates all aspects of daily life.”[…]
• From The Virginian-Pilot: “Proposal to help Virginia families afford supplies for sick, disabled children faces uncertain fate in General Assembly”
A proposal to have the state help parents afford medical supplies such as breathing tubes and specialized formula failed to get enough support in House of Delegates budget talks, but was supported in the Senate.
The budget amendment proposed in the House and the Senate would have allocated $21 million starting in fiscal year 2024 to the Virginia Department of Medical Assistance Services to fully reimburse families for the medical equipment their children need.
[…]Families in such situations are basically trained to run an intensive care unit out of their home, according to Michael O’Brien, a respiratory therapist and pediatric home ventilator program coordinator for the University of Virginia Children’s Hospital. He saidparents of these medically fragile children face many difficulties, such as the complexity of care which exacerbates the already present issue of a medical staff shortage.
“It’s harder for families to deliver the care in the way they were taught because they don’t have the supplies that they need,” he said.
The supply chain tangle caused by the pandemic has also reverberated into these homes, as required materials are used for longer then intended, according to O’Brien. This also makes the materials more expensive for families and for the durable medical equipment companies that are providing them at a loss because their reimbursements haven’t changed either, he said.
However, providers prescribe treatments as they do in order to keep people healthy and in outpatient care.[…]
• From Youth Today (opinion): “A state is being sued for warehousing children with disabilities in foster care”
Late last year, the Disability Rights North Carolina and the North Carolina chapter of the NAACP filed a class action suit against North Carolina Department of Health and Human Services Secretary Kody Kinsley, seeking to end discrimination regarding children with disabilities who are placed in foster care (as wards of the state), and who are then unnecessarily segregated from their home communities.
As a result, they are often isolated in heavily restrictive and clinically inappropriate institutional placements called psychiatric residential treatment facilities (PRTFs). This is not the first such class action. Ad litem attorneys (and others standing as “next friends”) to children with disabilities relegated to PTRFs all over the country are seeking similar relief.
[…]Some PTRFs arguably take children who have already been traumatized and traumatize them further, by preventing them from interacting with peers outside of the system, by forcing them into on-campus schools, by failing to allow them privacy, and by subjecting them to inflexible rules, rather than creating plans geared to meeting the individual needs of each child. Some PTRFS use physical restraints, emotional blackmail, and psychopharmacological restraints on children with disabilities.
What can be done for these children? The lawsuit argues that DHHS at the state and local levels must be held accountable. While safety of social workers is an understandable concern, the welfare of children with disabilities is of paramount importance. Social workers deserve to feel safe in their work environments in the balance of equities. Children with disabilities should not be warehoused; every effort should be made to assure that children with disabilities have the benefit of a nurturing, integrated, safe living conditions. […]
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