We are parents of children with disabilities that experience high support needs. We are also advocates for families in our community. 

As Oregon prepares to shelter in place, we are very concerned about children with Developmental Disability(DD)/Intellectual Disability (ID) and their families getting enough support.

We are thankful to hear that Developmental Disability Services will be allowing summer-time level of support hours during this crisis period, but are concerned because families already struggle to find Personal Support Workers (PSW) and Direct Support Providers (DSP) to fill these hours. These support workers are also challenged, and families report that their PSW/DSP are not coming to work because of their health or a family member being elderly/immunocompromised. 

In the Lane County, Oregon support forum we are part of, parents are already reporting added stress after just one week. Parental burnout and disrupted routines can lead to potentially unsafe living situations for these families. We know there already aren’t enough beds for our children when in crisis, which adds to the importance of giving all the support we can in the homes. 

Since some PSW/DSPs may be unable to work in homes at this time, we ask that you allow parents with children under 18 receiving DDS services to be considered support workers on an emergency basis. 

This would give families income which eases stress and decreases the likelihood of family collapse. Parents being able to step in as providers for high risk children limits chances of potential exposure as well. 

We understand that current Centers for Medicare and Medicaid Services (CMS) does not allow parents of disabled children to be paid care providers but that some states such as California, have been granted waivers to do so. 

California law found on the Disability California Rights site states: https://www.disabilityrightsca.org/post/in-home-supportive-services-ihss-alert-ihss-parent-providers-of-minor-children 

"You can be the IHSS provider for your child if you are prevented from obtaining full-time employment right now because no other suitable provider is available. You can also be the IHSS provider for your child if you left full-time employment because no other suitable provider is available. However, state law and regulations do not require that you left full-time employment at a particular time or for a particular reason or even that you have ever been employed full-time at all. You can be the IHSS provider even if you have never worked. The only requirement is that you are prevented from obtaining full-time employment because of the care your child needs now. 

According to state regulations, a parent can be an IHSS provider if “The parent has left full-time employment or is prevented from obtaining full-time employment because no other suitable provider is available and the inability of the parent to perform supportive services may result in inappropriate placement or inadequate care.” (Manual of Policies and Procedures (MPP) 30-763.451.) Full-time employment means 40 hours per week or more. (MPP 30-763.451(a).) "

We would like to ask the Oregon Health Authority to work with the Office of Developmental Disability Services to request changes that would allow parents to be paid caregivers for minor children during this time of crisis. We understand there has already been submitted initial requests  by ODDS to OHA for emergency relief from CMS in the face of this public health crisis.

Sincerely, 

Oregon Parents of Disabled Children