I am often complimented by people outside of the pediatric neurology world for what is perceived to be my “rare” dedication and commitment to advocacy, and my ability to combine the personal and professional for the greater good.  My response is always, “If you think I’m cool, you should meet my friends!”  I have met hundreds of brilliant activist-parents along the way, parents who blow my accomplishments out of the water, parents who inspire and educate me every day.  I am fortunate to have many of these parents as part of my group, Neurology Parent Professionals.  This section of the blog will be dedicated to featuring those parents’ favorite projects, in their own words.

I would like you to meet Les Rogers.  Les is a man of many talents, including a professional educator, a public policy expert, and an exceptional father.   I met Les in the infantile spasms parent support groups.  Les is always able to provide terrific advice, especially when it comes to health care financing.  He often mentions something called the “K Plan.”  One day, I asked Les to tell me more.  I was so impressed with his work in Oregon that I immediately knew that he needed to tell YOU more, too.  A special thank you to Les for sharing with us!

Without further ado, I am honored to share his story and expertise with you, in his own words:

The 1915 K Plan Waiver in Oregon:  The Best Thing to Happen to Disability Services in a Long Time

Truly Providing the Supports Families of Special Needs Children Require to Thrive

“The true measure of any society can be found in how it treats its most vulnerable members”-Ghandi

April 2017

By: Leslie Rogers

What are Medicaid Waivers and What is the 1915 K Waiver/K Plan in Oregon?

Medicaid waivers are programs that provide supports and services needed to people that would otherwise be in an institution, nursing home, or hospital to receive long-term care in the community (The History of Waivers). The 1915 K waiver is known as the Community First Choice Options, with the goal of keeping people in their community and not in an institutional setting. Serving people in the community is by far the least expensive option and why this program was created. Prior to 1991 the Federal Government only paid for services if a person was in an institution (MedicaidWaiver.org). The K Plan was born of the need to fulfill broken promises to the disability community over many years. In Oregon, Institutions were shut down without sufficient diversion of funds to Home and Community Based Services to meet the needs of individuals attempting to reintegrate into society (Erasing Fairviews Horrors). This led to a system that could only provide for families in crisis in Oregon, which was cruel and did not support families until nearly all hope was lost.

I will focus on how Oregon implemented the K Plan since that is my experience. The overall system of Medicaid waivers operates under rules from the Centers for Medicare and Medicaid Services (CMS). The system in Oregon is a Community based system with a significant preference for less expensive supported in home living and a  collection of group homes, foster placements, and some emergency placement facility options. This system also serves all ages that experience a qualifying level of need. In fact far more adults are on the K plan in Oregon than children, which is often forgotten in much of the literature that focuses on children on the 1915 K waiver.

What Services Are Provided?

The K plan in Oregon is a unique approach to providing services to families with special needs loved ones (Oregon K Plan Brochure).

Key Features of the Oregon System:

The anecdotal evidence is that the Oregon system has been much more expansive with its definition of what constitutes an institutional level of care. This has led to nearly every family that needs services getting qualified for services as opposed to the prior system of only serving those families in abject crises.

Key Features:

1. NO WAITLISTS by LAW: if you qualify you receive services. The state does have 90 days to evaluate the application, and there are Medicaid appeal rights etc.
2. Up to $5,000 worth of funding to provide things private insurance and Medicaid decline. Such as environmental modifications including lifts, changes for wheelchair accessibility etc.
3. No parental means testing: understanding that often the parents of special needs children are driven to bankruptcy at a far higher rate
4. Presumptive Medical: presumptive medical provides Medicaid as a tertiary payee (last in line payee) for those families of children with significant medical need. Keeps families from going through the cyclical bankruptcy cycle, and ending up on Medicaid anyway.

Services Provided:

1. Personal Service Worker Hours: These are hours of caregiver support designed to help individuals be included in the community
2. 24 Hour Respite days
3. Children’s In Home Intensive Services for children with significant medical and/or behavioral problems
4. Training for families and caregivers such as delegations of medical tasks etc.
5. Behavior Therapists, and Applied Behavioral Analysis
6. Service Coordination
7. Case Management
8. Family to Family Networks

What States Have the K Plan?

Federal Community First Choice K Plan

Five states have the K plan implemented in the United States:

1. California
2. Maryland
3. Montana
4. Oregon
5. Texas

These five states account for nearly a quarter of the United States population among them. Every state’s implementation of the K plan has been a little different. I hope that parents from some of the other states that have implemented the K plan will read this article and write about their own experiences, and how the K plan has worked in their state.

The Rogers Family’s Experience with the K Plan

 Our family was driven to the edge of bankruptcy following my child’s diagnosis of West Syndrome and nearly half year stay in a children’s hospital. The medical bills were piled a mile high. Not the least of which was caused by a drug company raising the price of her seizure drug from $40 a vial to $33,500 a vial, but that is a story for another time (Mallinckrodt Fine FTC Article). We were exceeding 1,000 explanations of benefits a year from our two insurance companies. It was a tsunami of work coordinating benefits and getting bills paid on top of caring for our child that many people face. It is the double tragedy of significant medical illness in our society first the medical tragedy, then the inevitable fights with insurance, and ultimately the bankruptcy cycle for many families (Sharpe and Baker, 2007). Following our release from the hospital after we finally got seizure cessation from West syndrome, our child had regressed to a newborn. Gloria is tube fed, suction dependent 24/7, and requires intense one-on-one care all day every day. We filed for Disability Services in our state, which is operated through the K plan. A case manager came and did an evaluation, and a few months later we received the results (they have 90 days to respond). Gloria’s level of need was bordering on 24 hour nursing care. She missed the Children’s Intensive In Home Services (CIIS) level of care by just a few points, We were awarded around 300 hours of care, presumptive medical, and began working on the environmental modifications needed to make our house wheelchair accessible. The presumptive medical helped us avoid bankruptcy. The Personal Service Worker hours of care have helped us keep Gloria supported in our home, and allowed us to provide night nursing so that my wife and I can continue to work and provide for all of Gloria’s uncovered needs that exceed what the K plan provides for. In short we were able to keep our family whole, keep our marriage, reduce the stressors and pressures, and continue to work and contribute to society.

We were saved when we received the K Plan, and we were able to keep Gloria in our home around December 2015. We scoured our area for a nurse looking for a night shift while we were waiting for the state to make a decision about Gloria’s enrollment and number of hours, and thankfully we found one and had her fill out the enrollment information to become a Personal Service Worker through the K Plan (this process has taken some of our workers two months). Thankfully we were all set and ready when the K Plan began, and we had enough hours to provide nursing for Gloria at night. This allowed us to continue to work, and begin to pay off the mountain of medical debts we had, and I could work providing money to cover Gloria’s medical equipment that was not covered. We also thankfully qualified for presumptive medical (which makes Medicaid a last payer up to our max out of pocket), which basically keeps parents of severely disabled children from going bankrupt, and losing everything over and over again (which has been my experience being around the disabled community my whole life). The K Plan saved my family and saved the state hundreds of thousands of dollars by keeping Gloria with her family at home and out of Skilled Nursing Facilities. That is the purpose of the K Plan.

How Do I Get the K Plan in My State?

My dream is that all families are supported like those in Oregon. We have a golden opportunity to advocate at the state and national level for the expansion nationwide of the K plan as a basis for the standards of support for families facing the challenges of caring for children and adults with special needs. Growing up with two adopted special needs siblings, and now caring for my daughter with Cerebral Palsy I know at a visceral level what life before the K plan was like for many families, and how so many families floundered and imploded without the supports that are needed to keep a family whole. Many children ended up in foster systems that could not find a placement for them, and languished in Institutions like Fairview in Oregon. With the K plan in Oregon those with special needs are being given an opportunity like never seen before in the United States. There is a chance for true community inclusion. I have presented to organizations like Rare Disease Legislative Advocates about the K plan to help garner national awareness of the transformative nature of K plan services in Oregon (RDLA K Plan Presentation-please utilize this resource to help advocate for the K Plan in your state). With your advocacy support coupled with organizations like the National Organization of Rare Disorders, and Rare Disease Legislative advocates we can strive to improve the standard of support for those needing services to be able to live full lives in their communities.

Resources

1. 1915 K Waiver CMS Website
2. Oregon Types of Services Provided that are Funded through the K Plan
3. Oregon K Plan Frequently Asked Questions
4. The History of Medicaid Waivers in the United States