FAQ on Waiver and Non-Waiver

 

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What is a Waiver?  Where does the term “waiver” even come from?

A waiver refers to a bundle of services that are paid via a system of reimbursement. In Virginia the waiver system is funded by a mix of federal Medicaid funding matched to state funding from the state budget. The term “waiver” referred to a time when parents signed documents “waving” their children’s rights to institutional care in favor of a community-based system of services.

Medicaid Waiver programs help provide services to people who would otherwise be in an institution, nursing home, or hospital to receive long-term care in the community. Prior to 1991, the Federal Medicaid program paid for services only if a person lived in an institution. The approval of Federal Medicaid Waiver programs allowed states to provide services to consumers in their homes and in their communities.

Where did the Home and Community Based Services (HCBS) Waiver get its start?

The waiver program was inspired by Katie Beckett. Katie Beckett, who was 3 years old and had been hospitalized almost since birth when President Ronald Reagan invoked her case as an example of irrational federal regulation in 1981. Four months after her birth at St. Luke’s Hospital in 1978, Katie contracted viral encephalitis, leaving her partly paralyzed, unable to swallow and barely able to breathe on her own. Her parents found themselves in a bureaucratic trap. They wanted to manage her care at home with a ventilator and began lobbying politicians and bureaucrats. The case led to what is known as the Katie Beckett Waiver.

Katie qualified for Supplemental Security Income, a Medicaid program run by the Social Security Administration. Under the old rules, if she had been taken home, her parents’ incomes would have been counted against her, and she would have lost eligibility for the aid. Yet her hospital care was costing $12,000 a month, six times as much as home care would have cost.

President Reagan heard about Katie from Vice President George Bush, who been told about her by Thomas Tauke, a Republican congressman from Iowa. At a news conference on Nov. 10, 1981, Mr. Reagan cited Katie’s case as an example of “hidebound regulations” that caused “tremendous expense to the taxpayers.” The rules, he said, forced her to stay in the hospital even though she would be better off at home. A day later, the secretary of health and human services, Richard S. Schweiker, waived the rules to let Katie return home without the loss of federal support. He also created a review board to handle similar cases. When she left the hospital a week before Christmas in 1981.

Home care worked for Katie Beckett. Although Ms. Beckett required nursing care an hour a day, five days a week, and 12 hours a day on a ventilator, she graduated from Mount Mercy University in Cedar Rapids in 2001 with a degree in English and creative writing. She held several jobs over the years, including one as a secretary in a homeless shelter. Katie Beckett died in the same hospital in which she was born at the age of 34 on 18 May 2012, but she lived 3 times longer than her doctors thought she would.

Someone that I support is on a waiver.  What kind of access to services and supports can I expect?

Access to DD Waiver services is based on demonstrated need. You should provide the Support Coordinator with enough information about your family member’s situation to help the Support Coordinator determine and explain to others what services are needed and why. A menu of services can be created to meet the individual’s needs.

Examples of the types of services available could include:

Residential Support Services (in-home and congregate)

Day Support

Supported Employment

Prevocational

Personal Assistance – both agency and consumer-directed

Respite – both agency and consumer-directed

Companion – both agency and consumer-directed

Services Facilitation

Assistive technology

Environmental modifications

Skilled Nursing

Therapeutic Consultation

Crisis Stabilization

Personal Emergency Response Systems (PERS)

Who do I contact to get waiver support for the individual that I support?

Contact your local Community Services Board. The phone number can usually be found in the city or county government section of the phone book under “Mental Health/Mental Retardation/Intellectual Disability.” Ask to speak to either a Support Coordinator Supervisor or intake worker in order to request services. For a listing of contact information for all CSBs, check out “Locate Services in Virginia” on the DBHDS website.

My sister/brother/family member/person that I am the Legal Guardian/POA/Authorized Representative for has been put on a “waiver waiting list.”  What can I expect?

Based on specific criteria, CSB Support Coordinators assess whether applicants may be included on one of the three waiting lists: the Priority 1, Priority 2 or planning list. DBHDS maintains a Statewide Waiting List that includes the names, of all individuals meeting the urgent and non-urgent criteria. The urgency of need of each individual on each CSB’s waiting list is re-evaluated quarterly by the Support Coordinator and any changes are forwarded to DBHDS for updating the Statewide Waiting List.

As waiver slots are added or become available whether or not your individual receives a waiver is based on multiple criteria, which includes priority level, at risk for homelessness and the number of waiver slots assigned per CSB. Unfortunately Virginia still has a wait list and until the wait list is ended, it could be years before a slot opens up for your individual.

I want to advocate for more waiver slots!  How can I help?

Join The Arc of Augusta either as a member or as a volunteer to help us to advocate within the state for funding and to continue to create fundamental changes in the waiver system. The Arc of Augusta in conjunction with other Arc chapters in Virginia and The Arc of Virginia is one of the single most advocating organizations in the state! We will help to learn the basics, to learn more specifics about advocacy and to help guide you in your journey to improve the lives of the individuals you care about and for others in a similar circumstance. There is power numbers and we need your support and your energy to add to our own to effect change!

For more information on Waivers, please see The Arc of Virginia’s Resource page on Medicaid Waivers.