Proposed rule will be burdensome for families of children with disabilities

Health

In November 2019, the Trump administration published a proposed rule in the Federal Register, “Rules Regarding the Frequency and Notice of Continuing Disability Reviews” from the Social Security Administration (SSA). Comments, originally due on January 17th, were postponed and due today, January 31st. At this writing, there are over 120,000 comments posted on Regulations.gov, and we hope more will be posted before midnight tonight.

For someone who is not a Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) expert, this rule was complicated and convoluted. As I learned more and spoke with people who receive these benefits, along with other experts, I discovered the proposed rule was convoluted and unclear to most of us.

Essentially what is happening in the rule is: the SSA plans to increase the number of Continuing Disability Reviews (CDR) for people who receive SSI and SSDI. The added frequency of reviews will be burdensome in terms of time and cost to families, as well as the administration, and the SSA has not shown how many people will lose benefits, nor precisely why these added reviews are needed.

We know that children and their families will be harmed due to additional CDRs. Complicated administrative paperwork that takes hours and the help of medical staff to fill out means parents will have less time and money to take care of their children with disabilities and tend to their jobs and other responsibilities. We oppose this proposed rule and submitted comments today.

Below is an excerpt from the comments we submitted:

More Frequent CDRs Will Be Burdensome for Families of Children with Disabilities

The families of children with disabilities face many difficulties throughout their days. Managing medical appointments, recurring illness, filling, and managing prescriptions, getting to and from work, school, and/or childcare all take on a different meaning when it involves a child with disabilities. Parents may be in constant contact with a school or child care center related to their child’s condition and needed care or treatment. Access to prescribed medicine may be a struggle. Transportation to and from medical appointments, school, and/or childcare can may require much planning and asking others for help. If these families are also receiving lower wages and/or working at inflexible jobs with shifts, they have a harder time staying connected to work and thus their families are at higher risk of eviction, losing their utilities, and may become food insecure.

Families of kids with disabilities will have to schedule and attend more frequent doctor appointments in order to complete the CDR, creating a burden for them. Paying for copies of medical records is financially burdensome. Asking employers to complete comprehensive employment data in the Mailer could be an annoyance and create a rift between the employee and the employer. Some of the forms may be too complex for some individuals with disabilities and/or their families to fill out, prompting them to miss answers or seek out help that will cost money. Families struggling to make ends meet, care for their children with disabilities and perhaps their own health needs do not have extra time to spend on arduous administrative red tape and paperwork.

In 2015 alone, 34% of initial cessations were reversed on appeal – revealing that this system does not work as it is now and should not be made more frequent. This is not the right step to improve the system.

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