I appreciate that the cap is described as ‘soft’ and that exceptions are available. But a weekly limit is still concerning if families must prove extraordinary need to preserve hours that are already necessary for a child’s safety, health, personal care, communication, mobility, behavior support, and inclusion in community life. Many children with Down syndrome have needs that vary greatly from one child to another, and those needs cannot be safely captured by a one-size-fits-all number.

I urge DMAS to revise or clarify several provisions to ensure that children with Down syndrome and other developmental disabilities do not lose individualized, medically necessary supports.

First, I am concerned about implementation of a 56-hour weekly “soft cap” on personal care/assistance in the Community Living and Family and Individual Supports waivers. Children with Down syndrome have highly individualized needs. Some need extensive assistance with activities of daily living, supervision for safety, communication support, mobility assistance, feeding, medical needs, or support related to co-occurring conditions. A weekly benchmark should never operate as a de facto cap or create an assumption that care above 56 hours is unusual or unjustified.

DMAS should ensure that exceptions above 56 hours are available through a simple, timely, and child-centered process; are decided before existing hours are reduced; are based on functional need and risk of institutionalization rather than diagnosis alone; and include clear written decisions and meaningful appeal rights. Families should not experience gaps in services while an exception request or appeal is under review.

Second, DMAS should protect continuity of consumer-directed services during the transition from standalone services facilitation to the statewide service-broker model. Families need a readily accessible, knowledgeable contact who can help with hiring, payroll, authorizations, training, and problem-solving. The transition should not interrupt care, reduce family choice, or make it harder to retain dependable workers.

Third, any changes to Employer of Record rules should preserve appropriate safeguards for minors and individuals who cannot independently direct care. Parents, guardians, and authorized representatives must be able to carry out necessary employer responsibilities without unnecessary administrative barriers.

Finally, I ask DMAS to reconsider removal of legally responsible persons as providers of Employment and Community Transportation, or at minimum establish a meaningful exception when no safe, accessible, and reliable alternative is available. Transportation is often essential to community participation, therapy, health care, employment preparation, and family stability. Removing legally responsible persons as allowable providers of Employment and Community Transportation may be troubling where a parent is the only practical, trained, reliable person able to transport a child safely, particularly in rural areas, for medical appointments, therapies, jobs, volunteer activities, or community programs. 

Virginia’s waivers should remain genuinely person-centered: services should be determined by each child’s assessed needs and family circumstances, not by an administrative limit that may not reflect the realities of care at home.