Per this document http://townhall.virginia.gov/UM/chartpetitionpublic.pdf I would like to use the Code of Virginia 12.3-45 and Code of Virginia Section 2.2-4007 to request that DMAS change the regulations relating to the Medicaid Elderly or Disabled with Consumer-Direction (EDCD) Waiver.

1) Repeal all Medicaid Elderly or Disabled with Consumer Direction Waiver regulations into one regulation that assertively promotes the home and community presence and participation of persons with disabilities. For example, the EDCD Waiver should seek to encourage disabled people eating in restaurants with wait staff and flying airplanes to national and international destinations.

Repeal 12VAC30-120-900, 12VAC30-120-980, 12VAC30-120-930, 12VAC30-120-920,  12VAC30-110 and 12VAC30-20-500 through 12VAC30-20-560, 12VAC30-120-758, 12VAC30-120-762, 12VAC30-120-2000, 12VAC30-120-2010 and any other regulation about the EDCD Waiver into one regulation that clearly and completely explains the program.

2) Change the EDCD Waiver regulation to increase $11.47 hourly personal attendant wage by multiples, so that the personal attendants who are often family of the disabled individual will have the freedom of choice to purchase their own charitable contributions, housing, utilities, car, food, clothing, medical, entertainment, travel and other needs and wants. Persons with disabilities and their caretakers should have the income to eat in restaurants with wait staff, to fly and to participate in other good and enjoyable things. This is a love, truth and disability rights issue. Many personal attendants are family members and friends of persons with disabilities who do not want their family and friends to end up in foster care, nursing facilities, assisted-living facilities, other mental health institutions, group homes, etc. Freedom of choice allows family and friends, the best people, the biggest lovers of persons with disabilities (after God and persons with disabilities,) to be caregivers for persons with disabilities.

3) Change the EDCD Waiver regulation to include an annual cost of living increase for the personal attendants.

4) Change the EDCD Waiver regulation, so that personal attendants and the employer of record can be the same person. Single parents need to be able to be both the personal attendant and the employer of record. Many single parents go through obtaining custody and child support for the disabled child because the noncustodial parent refuses to provide for the disabled child financially and in other ways. Married couples also benefit when a personal attendant and the employer of record are the same person. For example, a husband who is primarily the employer of record and a wife who is primarily the personal attendant can switch roles allowing the husband to serve as the personal attendant. Some personal attendants work more than 40 hours weekly and need rest. All personal attendants should be paid. Some family have more than one elderly or disabled member and also need flexibility of personal attendants and the employer of record being the same person.

5) Change the EDCD Waiver regulation, so that an individual age 18 and older can be a personal attendant including parents of minor disabled children, spouses of disabled individuals, all biological/adoptive family members and others.  Encourage family to be personal attendants.

6) Change EDCD Waiver regulation, so that an individual age 17 and younger who is the mother/father of a disabled individual can serve as a personal attendant/employer of record.

7) Repeal EDCD Waiver regulation implementing periodic authorization. There should be one evaluation to qualify for the EDCD Waiver and no further authorizations. Disabilities like autism and Down Syndrome are life-long. Also institutions have a long history of discriminating against persons with disabilities.

8) Change EDCD Waiver regulation, so that disabled individuals have compliments or complaints handled by the EDCD program head. Disabled individuals or their representatives are not to go through the Medicaid appeals process. EDCD Waiver is to handle compliments/complaints as an opportunity to improve the EDCD Waiver service not as a way to reduce or deny benefits/income to disabled individuals and their personal attendants. EDCD Waiver should strive to ensure that personal attendants are continuously paid and providing service to elderly or disabled individual from day one of birth and older until end of disability or death.

9) Change EDCD Waiver regulation, so that service facilitators are visiting disabled individual and their representatives once annually to inform them about the EDCD Waiver, check that the personal attendants are being paid continuously and to trouble shoot payment problems.

10) Repeal EDCD Waiver regulation where service facilitator is collecting data on the disabled individual and their family/personal attendants as it relates to the periodic authorization. (See point 7 where the periodic authorization is repealed.)

11) Change EDCD Waiver regulation, so that service facilitators are responsible for informing local medical facilities, mental health facilities, schools and government agencies about about the EDCD Waiver with the goal that these groups will tell persons with disabilities and their families and friends about the EDCD Waiver. One of the goals should be that when parents receive genetic counseling they are also told about the EDCD Waiver, so that from day one if a disabled individual is born, they are enrolled in the EDCD Waiver receiving personal attendant and other services. Another goal is to end situation where some family have disabled members in foster care, nursing facilities, assisted living facilities, group homes and other institutions not because they want them there but because they have no knowledge of or little knowledge of the EDCD Waiver. 

12) Change EDCD Waiver regulation, so that service facilitators assist a disabled person holding a Virginia EDCD Waiver with a move to another state and his/her personal attendant not lose any income.

13) Change EDCD Waiver regulation, so that service facilitators work on problem of how to help a disabled person with an EDCD Waiver from another state to move to Virginia without his/her personal attendant losing income.

14) EDCD Waiver should be a tool to empower disabled person to live daily the best possible life.

DMAS plans to post this petition for rule making as required by the Code of Virginia.

AGENCY RESPONSE:  DMAS declines to initiate the requested rule making action pursuant to the Code of Virginia § 2.2-4007 (C). DMAS has been undergoing a rule making action for the EDCD waiver for the last several years that it believes may address a number of this petitioner's issues once its final stage regulations can take effect.  The agency's statement of its reasoning follows.

1. The petitioner requested that DMAS repeal its regulations for the Elderly or Disabled with Consumer Direction (EDCD) waiver (12 VAC 30-120-900 et seq.), its provider and Medicaid enrollee appeals regulations (respectively, 12 VAC 30-20-500 through 12 VAC 30-20-560 and 12 VAC 30-110), regulations in the Individual and Family Developmental Disability (DD) waiver concerning assistive technology and environmental modification services (12 VAC 30-120-758 and 12 VAC 30-120-762, respectively) and its Money Follows the Person regulations (12 VAC 30-120-2000 and 12 VAC 30-120-2010). The petitioner requested that these regulations be combined into one regulation that clearly and completely explains the program.

DMAS Response:

The EDCD waiver currently serves 30,078 individuals across the Commonwealth who are either elderly or disabled or both. It covers personal care services (help with Activities of Daily Living (such as bathing, eating, toileting, dressing)), adult day health care, respite care, limited assistive technology, Personal Emergency Response Systems (PERS), PERS medication monitoring, limited environmental modifications, transition coordination and services. It has thousands of providers enrolled to render services. It has been operating across the Commonwealth since 1982 and annually brings more than $27 million in federal funds into the Commonwealth (State Fiscal Year 2013).  The Virginia General Assembly appropriates more than $27 million annually for this waiver.

The individuals served in this waiver depend on these services to enable them to remain in their homes and communities thereby avoiding more restrictive and costly institutionalization in nursing facilities. Enrollees served in the waiver, in the aggregate, can no longer remain in their communities when the costs of their community care exceed the comparable aggregated institutional care. These enrollees are permitted to self-direct their care via the consumer-directed model or have a home care agency direct their care. 

Merging the EDCD waiver regulations, the provider and Medicaid enrollee appeals regulations, the DD waiver sections for assistive technology and environmental modification services and the Money Follows the Person regulations into one regulation is not a workable proposition. Each of these programs serve a unique population, or address a separate and unique function.  Combining all these regulations would in fact create confusion for both providers and waiver individuals.  The purpose of regulations is to establish rules that govern the coverage, provision and reimbursement of Medicaid-covered services, in compliance with federal and state laws.  Medicaid regulations are necessary to protect individual rights and support the agency's claims for Federal Financial Participation. They are often unavoidably complex, but are also not designed to be voluminous.  DMAS therefore publishes other materials, such as Medicaid memoranda, manuals and handbooks that are designed to provide a fuller explanation of Medicaid requirements.

Finally, DMAS maintains two separate sets of appeal regulations, one for individuals and another for providers, because these two populations are distinctly different and the legal processes for their appeals are unique to each population, precluding the application of one set of rules to both populations.  Therefore, DMAS must necessarily maintain the separate status of these two sets of regulations in particular.      

2. The petitioner requested that the EDCD waiver regulations increase the hourly personal attendant wages (currently $11.47 per hour) so that such attendants can have the freedom to purchase their needs and wants.

DMAS Response

Within constraints set by the Virginia General Assembly, DMAS is required by federal law to establish payment rates sufficient to attract enough providers to meet the medical care needs of its covered Medicaid individuals. DMAS has no data to indicate that the EDCD waiver does not enroll sufficient numbers of personal care attendants for the number of waiver individuals.  DMAS' provider payment rates are constrained by the General Assembly's appropriations and the related federal matching dollars, and are intended to reimburse providers for their costs, plus a reasonable profit.  The Virginia General Assembly provides for DMAS reimbursement is accordance with this principle, and it is not responsible to provide a certain standard of living for Medicaid providers.

3. The petitioner recommended that an annual cost of living increase be provided for personal attendants.

DMAS Response

                The amounts the Agency can reimburse providers are determined, in part, through Federal law but largely through the Virginia legislative process.  The General Assembly controls the Agency’s budget and DMAS has no independent authority to raise or reduce reimbursement rates.  The Agency encourages the petitioner to address these concerns with the General Assembly.

4. The petitioner requested that the regulations permit the personal attendant and the Employer of Record to be the same individual.

DMAS Response

                Personal attendants in the EDCD waiver are responsible for providing personal care or respite services that can be directed by the employer of record (EOR) in the consumer-directed model of care.

                Employers of Record (EOR) in the EDCD waiver are responsible for performing the functions of the employer in the consumer-directed model of service delivery and may be the waiver individual, a family member, caregiver or other person. 

                The current regulations and the previously referenced final stage regulations do not permit the personal attendant and EOR to be the same person because a person cannot simultaneously be the employer and the employee due to conflicts of interest. Individuals who elect to use the consumer-directed model of care are being required, in the new final stage regulations, to receive services from CD Services Facilitators (SFs).  SFs are prohibited from being the waiver individual, the attendant, a service provider, spouse or parent of the waiver individual or the EOR.

5. The petitioner requested that parents, spouses, and all biological/adoptive family members be allowed to be personal attendants for individuals enrolled in the EDCD waiver.

DMAS Response

This is permitted for some family members, in limited circumstances, in the current regulations and the new EDCD final stage regulations. Spouses and parents of minor children are not currently permitted to be paid caregivers nor is this allowed in the new final regulations. In limited circumstances when a family member or caregiver lives under the same roof with the individual with a disability they are permitted to be paid caregivers. In such instances, when either the consumer directed services facilitator or the agency-directed nurse supervisor documents in the record that there are no other providers or aides, then DMAS does permit family members to be paid caregivers.

6. The petitioner requested that a person aged 17 years and younger, who is the parent of a disabled individual in the waiver, be permitted to serve as the individual's personal attendant and employer of record.

DMAS Response

                In the earlier referenced final stage regulations, DMAS is requiring persons serving as personal care attendants (consumer directed model) and personal care aides (agency directed model) to be at least 18 years of age. As the age of majority in Virginia, it is therefore the youngest age at which a person is legally responsible for his actions. DMAS must be able to enforce its program requirements with persons who can be held legally responsible for their actions.  This rule is in place to protect the health and safety of waiver individuals.

7. The petitioner requested that the periodic authorizations be discontinued as disabilities like autism and Down Syndrome are life-long.

DMAS Response

While it is true that disabilities like autism and Down Syndrome are life-long, individuals with such disabilities can frequently experience changes in their medical, social and cognitive conditions. Such changes must be identified promptly so that required service changes can also be implemented promptly. DMAS' mechanism for quickly ensuring that changes are identified and responded to is the periodic authorizations.

8. The petitioner requested that waiver individuals' complaints be handled by the head of the EDCD waiver program instead of the appeal process.

DMAS Response

An appeal is defined in the existing EDCD waiver regulations as, "the process used to challenge adverse actions regarding services, benefits, and reimbursement provided by Medicaid pursuant to 12 VAC 30-110 and 12 VAC 30-20-500 through 12 VAC 30-20-560. Complaint is defined in DMAS regulations and documents as a 'grievance'.  Grievance is defined as an expression of dissatisfaction about any matter 'other than an adverse action'. Possible subjects for grievances include, but are not limited to, the quality of care or services provided, aspects of interpersonal relationships such as rudeness of a provider or employee, or failure to respect the individual's rights. Complaints or grievances are handled by the EDCD waiver personnel or contractors.  They do not rise to the level of appeals. Appeals of agency or contractor decisions that are adverse to the individual, as per 12 VAC 30-110 and 12 VAC 30-20-500 through 12 VAC 30-20-560, carry appeal rights to DMAS.  The resolution of complaints and grievances is the responsibility of the head of the EDCD waiver program or his or her designee (contract monitor, contract manager), or appropriate supervisory personnel for the actual EDCD waiver provider.  Appeals of adverse actions are required by federal law.

9. The petitioner requested that service facilitators visit the waiver individuals and their representatives only once annually to check that personal attendants are being paid continuously and trouble shoot payment problems.

DMAS Response

In the current regulations as well as in its pending final stage regulations, DMAS is requiring that services facilitators (SF) monitor, at least every 90 days, the delivery of services set out in the waiver individuals' Plans of Care (POC). The SF are being required to review the utilization of services to evaluate the adequacy and appropriateness of CD services as compared to waiver individuals current functioning, cognitive status, and medical and social needs. The SF is also charged with reviewing the time sheets submitted by the attendant to ensure that hours approved in the POC are being provided and not exceeded. The SFs' documentation of such visits and reviews must record individuals' status, satisfaction with and adequacy of the services, the presence of any suspected neglect or abuse, any special tasks performed by attendants, any hospitalization or changes in medical condition, functioning, or cognitive status. In light of the fact that the EDCD waiver serves individuals who are elderly or disabled, or both, DMAS believes that this frequency of SF monitoring is appropriate given how quickly such individuals' conditions can and do change.  This rule is in place to protect the health and safety of waiver individuals.

10. The petitioner requested that the services facilitator stop collecting data about the individual and their representative as it relates to the periodic authorization.

DMAS Response

DMAS requires SFs to collect only that data about individuals that is sufficient to ensure that they are adequately and appropriately cared for by their attendants. This oversight is meant to ensure that the services being provided are consistent with the Plan of Care. This policy is in place to ensure the health and safety of individuals who are enrolled in the EDCD waiver.

11. The petitioner requested that the services facilitators be responsible for informing local medical facilities, schools, mental health facilities, etc., about the existence of the EDCD waiver program. The goal would be the enrollment from day one of birth of an individual with a disability or disabilities.

DMAS Response

DMAS can reimburse providers only for Medicaid covered health care services rendered to Medicaid enrolled individuals.  The Agency is not legally permitted to require providers to perform outreach of the nature suggested.  Automatic eligibility from day one after birth is not legally permissible.  Waiver eligibility is based upon a disability determination process, which is a federally required process and cannot be sidestepped.

12. The petitioner requested that services facilitators be responsible for moving a disabled person to another state so that his personal attendant does not lose any income.

DMAS Response

SFs may assist individuals who move to another state with the medical logistics associated with a move, but DMAS cannot require this.  Moving to another state is not a Medicaid covered service and Medicaid providers can only be required to perform those services for which they can seek Medicaid reimbursement.

13. The petitioner requested that services facilitators work on the problem of how to move disabled persons to other states without the personal attendants losing income.

DMAS Response

DMAS is not required to guarantee personal income nor a certain standard of living to personal care attendants. Reimbursement is paid for Medicaid-covered services designated in the Plan of Care.  If an individual moves away from Virginia, attendants can work for other individuals in need of personal care services.

14. The petitioner requested that the EDCD waiver be made "a tool to empower disabled person to live daily the best possible life."    

DMAS Response

DMAS believes that its revised final stage regulations accomplish this recommendation of the petitioner.