Waiver Services and School Nurses:
Katie Beckett Services Waiver or Home and Community-Based Services Waivers
Is this something a school nurse needs to know about? Maybe not, but you might be best placed to help a family in need gain information about them.
What families might need them? A family with with one or more children with a disability and a good income.
Why don’t low income families need them? Families that have medicaid services for children have a different pathway to services through SSI and SSDI.
First, some definitions:
SSI and SSDI stands for Supplemental Security Income—SSDI stands for Social Security Disability Insurance.
SSI - is money from the federal government that is available for children and adults with disabilities with low income and few resources. There is an application process, and one must qualify to receive this.
These programs work for families under a certain income threshold. For families over that threshold there are a couple of other pathways to support for their child with a disability.
There is the Katie Beckett Waiver or “pathway”. “Under the Katie Beckett option, states can cover children under age 19 who are disabled and living at home and who would be eligible for Medicaid if they were living in an institution. The Family Opportunity Act allows children with disabilities whose family income is below 300 percent of the federal poverty level to buy into Medicaid. As of 2015, 49 states and the District of Columbia offer the Katie Beckett option or comparable coverage, while 5 states have adopted the option authorized in the Family Opportunity Act (O’Malley Watts et al. 2016).” https://www.macpac.gov/subtopic/children-with-disabilities/ MACPAC—Medicaid and Chip Payment and Access Commission.
I reached a point where I needed help finding programs that might be available for Sheila. It is very hard to be a service coordinator and mother to a child. Sometimes the emotions of a mother get in the way of sounding professional when reaching out for help. Sheila would never qualify for SSI or SSDI as our household income was too high. The total cost of Sheila’s open-heart surgery in 1987 would have bought us a second home at 1983 prices of starter homes. In other words, it was incredibly expensive. We had decent medical insurance, but it still left us with eye-watering bills.
I called our state Office for People with Developmental Disabilities and asked them how to get service coordination for Sheila. I was asked if she had Medicaid, when I explained she did not qualify because of our income I was informed there was a way forward.
By now Sheila had been receiving services through the school district for four years. Not once had anyone, nurse, social worker, any of her service providers, CPSE or CSE chairpersons informed us about Home and Community-Based Services Waiver—New York States version of the Katie Beckett program.
What are some of the services provided by waiver services programs besides Medicare Service Coordination?
Home health care, such as:
Skilled nursing care
Therapies: Occupational, speech, and physical
Dietary management by registered dietician
Pharmacy
Durable medical equipment
Case management
Personal care
Caregiver and client training
Health promotion and disease prevention
Hospice care (comfort care for patients likely to die from their medical conditions)
Human Services support daily living
Respite
Residential rehabilitation
Senior centers
Adult daycares
Congregate meal sites
Home-delivered meal programs
Personal care (dressing, bathing, toileting, eating, transferring to or from a bed or chair, etc.)
Transportation and access
Home repairs and modifications
Home safety assessments
Homemaker and chore services
Information and referral services
Financial services
Legal services, such as help preparing a will
Telephone reassurance
Do I think school nurse must have this knowledge at their fingertips? Maybe not really, however, it would not hurt. Someone needs this knowledge in the school system as a stop gap measure, in case no one else has helped a struggling family before the child enters school. Sheila was between 7 and 8 years old before we found out about, and the application process had been completed. That’s too many years of struggle without the help a service coordinator can provide.
My boss as asked me more than once to talk with a family that might benefit from this program. Why me? Because she knows, I’ve lived through the need for it and did not have it for our daughter until mid-elementary school. She knows I have the practical first steps knowledge of how to apply for it. But most of all she wants to make sure another family doesn’t spend years trying to do it all without help.
What other supports did Sheila have? We received some respite and residential rehab support while she was growing up. Some of her support folk took her out into the community. A few of them were young women, only a few years older than her when she was in her mid to late teens. They had a more pal like energy with Sheila instead of the motherly, or grandmotherly energy that others had. The biggest benefit to our family was the service coordinator that worked with her the longest. She provided her with opportunities and support that was invaluable.