Pg. 176 of 333, “Family members living under the same roof as the individual being served may not provide services unless there is objective written documentation completed by the case manager/support coordinator as to why there are no other providers available to provide services.

The individual’s case manager/support coordinator is instrumental in ensuring that services are appropriate for individuals. If the case manager/support coordinator does not feel that it is in the best interest of the individual for a certain family member or legal guardian to be a paid service provider, it is his/her responsibility to address this. The case manager/support coordinator must verify that situations or serious extenuating circumstance exists that necessitates a family member as provider. The case manager/support coordinator must ensure that there was previously no barrier to the family member being a provider (i.e., slot assignment information included references to the family’s inability to care for the individual). The case manager/support coordinator must monitor the situation to ensure that the individual’s growth toward independence is not hindered by having a family member as a paid support person and that the family member remains aware that there is a different relationship once he/she is paid to support the individual.

Payment may only be made for services furnished by other family members who are living under the same roof as the individual receiving services if there is objective, written documentation as to why there are no other providers available to provide the care. This documentation must demonstrate that there are no other persons available to provide supports to the individual other than the unpaid family/caregiver who lives in the home with the individual. Examples of such documentation may be: (i) copies of advertisements and/or interview notes showing unsuccessful efforts to hire a consumer-directed assistant; (ii) documentation indicating high turnover in consumer-directed assistants or other paid staff; (iii) documentation supporting the individual’s special medical or behavioral needs which can only be safely met by a family member; (iv) documentation of the repeated inability to obtain service providers due to the family’s remote location; (v) documentation of the failure of multiple providers to adequately provide supports to the individual or; (vi) documentation indicating that language is a factor in service delivery. Such family members, if approved to provide services for the purpose of receiving Medicaid reimbursement, shall meet the same provider requirements as all other licensed providers.”

There is no ethical or business case for prohibiting family or household members from providing paid care to individuals who are eligible to hire and direct their own attendants and comply with every regulation. No evidence anywhere demonstrates that non-household members are more cost-effective than family members, but there are plenty of studies that show they are. The rationale that this is an existing regulation that just wasn’t enforced until after the pandemic began winding down is not sufficient to violate individual choice rights and force individuals to accept very personal and private care from any “other available person.” This language represents several concerning rights violations, especially given the decade-long U.S. DOJ Settlement Agreement:

• This language assumes that “family members living under the same roof as the individual being served” is only appropriate in “serious extenuating circumstances” and should therefore be a last resort. This is contrary to the entire purpose of CMS’ HCBS program and directly violates the individual’s rights to individual choice and consumer-directedness that the Commonwealth is committed to protecting.
• The case manager/ support coordinator (CM/SC) is a mandated reporter, and if s/he “feels it is not in the best interest of the individual for a family member to be a paid service provider”, then it’s also not in their best interest to be an unpaid caregiver or be living under the same roof. This language describes reportable concerns that should explore removal from the home, not making the CM/SC “responsible for addressing this” by demanding “objective written documentation” about why it is acceptable.
• The title and intent of this service is consumer-directed, and in every other service consumer choice and self-determination is a key element for which many safeguards are designed. There are also safeguards in place for individuals who make choices that harm themselves or others, including incompetency hearing for the individual or the guardian, such as if they choose to hire and direct anyone, family member or otherwise, who the CM/SC is concerned about the best interest of the individual.
• Family members who are acceptable as paid consumer-directed attendants under this policy are required to “meet the same provider requirements as all other licensed providers.” Personal attendants are not interchangeable based on only their availability. Many studies show that family caregivers are the most effective, affordable, and acceptable providers for people with disabilities. Even managed care organizations and insurance companies, as well as CMS recognize that the costs of licensed providers far exceed non-licensed, consumer-directed providers. What is the intention of this rights-violating policy? It isn’t to save costs because the only way this policy will save costs is if no one at all is authorized to be a paid provider.

Change this language to reflect the values of our community. In the Commonwealth, individuals choose and direct their own personal care attendants, period.