EXHAUSTED from taking care of your disabled child? The CES Waiver may be for you.
If you ever want to spark lively conversation with the parents of disabled kids, just ask if they struggle with sleep challenges, and see what happens.
I can relate. When people ask me how I identify, I say I have identified as ‘tired’ for the last 17 years!
I was out to brunch recently with a group of moms and nearly all shared stories about the pursuit of better sleep. I realized how widespread this issue is, and how it impacts the entire family. The primary caregiver (usually the mom) often suffers from years, and eventually decades, of poor sleep. This has negative impacts on intimate partnerships, health, weight, memory/cognitive health and the ability to maintain employment. It was very reassuring to hear that all of us share the same status of ‘sleep deprived’ and are still seeking solutions, even after many years.
There is one waiver whose eligibility criteria requires nighttime intervention by caregivers: the CES Waiver, or Children's Extensive Support Waiver, which we’ll detail here. While this makes the CES waiver harder to apply for, the waiver also offers additional benefits over other waivers, making it worth the effort.
Many parents explore pharmaceutical interventions to improve their sleep, which can be a long experimental process often involving expensive sleep studies overnight in hospitals, or trying sleep-inducing drugs.
Some use specialty medical beds to prevent injury and eloping of their disabled child. Many families use video monitors and alarms for doors and windows. And more common than most realize, a parent ends up sleeping in the same room with their child to prevent harm.
All of these are interventions done in response to sleep issues and can be used when applying for a Colorado Medicaid CES waiver.
If one is fortunate enough to find interventions that improve sleep, that will not mean you will lose the CES waiver. If the interventions were implemented over earlier documented sleep issues, that should be shared in the intake. There are sleep issues, but medication or other interventions have reduced the interventions. The state and federal government want better lives for CES families, so don't be concerned that an improvement of sleep or behavior automatically means a loss of the CES waiver.
The journey to find effective sleep interventions usually takes many years and includes professionals, tests, and several trials of therapies and drugs. Medicaid does not seek to punish those who have improved their sleep situation, but clear documentation is critical. And remember, you always have the right to appeal any waiver termination under the Administrative Law Judge process. Always appeal a termination! You can represent yourself in the appeal process or get a free advocate from Family Voices Colorado.
The waiver process allows the state to offer Medicaid medical benefits, as well as additional benefits including the HCBS services, to help disabled people live and thrive in their homes and communities. Waivers can also offer payment for the services that live-in caregivers provide (as a bonus, this income is free from federal income tax!). Medicaid members can qualify for paid nursing-level of care services (CNA or PDN) depending on how much help they need with the activities of daily living. In addition, on the CES waiver, families can provide up to 10 hours a week of paid care for community connector and homemaker (enhanced or basic). Waivers also provide the funding to pay outside hired caregivers, as well as service providers for a variety of support services that can easily provide a total value of $100k a year or more between HCBS and Medicaid medical services.
As you can see, the CES waiver offers life-transforming benefits and services that empower and support disabled family members and their caregivers to live full and independent lives! Plus, the potential for earning caregiver income and the value of funding HBCS services at up to $100K per year or more can boost your family’s financial security and help you save more for retirement. To find out if you’d benefit from getting on a Colorado Medicaid waiver, take our free assessment HERE. If you’re already on a waiver, find out if you’re leaving funding on the table and if you could be getting more out of it by taking our free assessment HERE.
CES Waiver Eligibility Criteria Details
The CES waiver is for children ages 0-17 with a significant developmental and/or intellectual disability (DD). The criteria includes behavioral issues as well as sleep challenges. There are many services available and parents/family can be paid for some HCBS services as well as home health nursing or CNA support. The CES waiver service plan annual limit, or ‘SPAL,’ for non-Denver residents is $61,176. Denver City and County residents have a higher SPAL due to a higher minimum wage, so the SPAL is $63,807.
Level of Care
Children must meet Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) level of care which is determined by the Functional Needs Assessment (ICF/IID services are defined in the Code of Federal Regulations: 42 CFR § 440.150)
Eligibility Group — Children in this program:
Are less than eighteen years of age
Have been determined to have a developmental disability which includes developmental delay if under five (5) years of age
Live in the family home
Demonstrate a behavior or have a medical condition that requires direct human intervention, more intense than a verbal reminder, redirection or brief observation of status, at least once every two hours during the day and on a weekly average of once every three hours during the night. The behavior or medical condition must be considered beyond what is typically age appropriate.
Are determined to meet the Federal Social Security Administration's definition of disability
Financial Criteria
Children must meet the Health First Colorado financial determination for Long-Term Services and Supports eligibility. Financial determination requirements are outlined in the Colorado Code of Regulations 10 CCR 2505-10, Section 8.100.
CES Waiver Benefits and Services - click for full list
Learn more about the CES waiver:
https://hcpf.colorado.gov/childrens-extensive-support-waiver-ces
What have been YOUR sleep disruption experiences and solutions? Please share your comments and suggestions with our community, because your experiences might help others!