The Tennessee Disability Coalition offers these comments on proposed rules to carry out the Katie Beckett Program as defined by amendment 40 to the TennCare demonstration waiver. Our comments are based on the recommendations and input we received from our member organizations and the families that we serve.
The intent of the Tennessee General Assembly in creating this program was to help children with complex medical needs and significant disabilities access the health care services they need and to help families manage their care and its costs. Since the law’s passage, the TennCare Bureau has actively worked to engage stakeholders to develop the Katie Beckett Program. Select clinicians, families, and advocacy organizations were invited to provide input on program development with the Bureau.
Consistently, stakeholder input has emphasized that in order to fulfill the intent of the Katie Beckett Program, the level of care criteria, services available and service delivery options for Part A home-and community-based services and the Part B Medicaid Diversion Plan would need the flexibility to adapt to the low incidence and unique needs of the children served. It also must take into consideration the whole picture of the family needs and available supports.
We are concerned that the proposed rules lack the flexibility necessary to effectively evaluate or care for Tennessee children with complex needs and significant disabilities. We fear this rigidity creates additional burden for families rather than alleviate it.
We are concerned that the level of care criteria is not developmentally appropriate. In particular, definitions of activities of daily living describe solely motor-based skills rather than skills that speak to a child’s functional independence in completing these activities. This may inadvertently sway eligibility toward children who have challenges completing tasks because of physical limitations rather than developmental.
The Katie Beckett Program will not have the luxury of operating within a vacuum. Proposed rules are inconsiderate of Tennessee families experiencing the national pandemic, ongoing nursing and direct support professional shortage and rural access disparities. We emphasize that rules must be amended in order to operationalize this program effectively in the real world.
In addition to these global concerns, we would like to offer comment on specific components of draft rules which are excerpted below.
1200-13-01-.02 Definitions
(1) Activities of Daily Living (ADLs)
(b)6. Mobility: The ability to move between locations in the individual's living environment. For children, this includes home and school. Mobility includes walking, crawling, or wheeling oneself around at home or at school. For purposes of medical (level of care) eligibility for children, mobility does not include transporting oneself between buildings or moving long distances outdoors.
This definition of mobility is exceedingly limited. It is imperative that this definition include a broader range of motion, far beyond a child’s ability to move his or her legs or operate an assistive device on wheels.
1200-13-01-.11 Medical (Level of Care) Eligibility Criteria for TennCare Reimbursement of Care for Children in the Katie Beckett Program
(3)(a)1. (ii) Tier 1 – Behavioral Institutional LOC.
(I) The child has one of the following:
(II) Autism and a severe or profound communication disorder
Autism is characterized by a severe or profound communication disorder. It is confusing and could be deleterious to require additional diagnoses for a child to be eligible for needed services.
(3)(a)1.Tier 1 – Behavioral Institutional LOC
(III) B. Self-Injurious behaviors and/or physically aggressive behaviors must occur at least once a week if the intensity of such behaviors routinely requires engagement of crisis supports, including behavior crisis teams, law enforcement, or emergency medical treatment to prevent or treat serious harm to the child or others.
(IV) A. Crisis Mental Health Services. The child has an established pattern of utilization of crisis-related behavioral health services over the previous six months, which may include repeated mobile crisis calls, emergency department visits, psychiatric hospitalizations, and/or residential or intensive in-home treatment. The use of psychotropic medications (including PRN usage for purposes of chemical restraint in a behavioral crisis) is not considered a crisis-related behavioral health service. Nor is routine psychiatric care or outpatient therapy.
We are concerned that the metrics chosen are dependent upon the family successfully engaged external health care personnel. This may not be possible for Tennessee families for any number of reasons including lack of access in rural areas. Importantly, many families have given up on the above described “resources” and “services” because they do not adequately or safely treat their child’s behaviors and may involve associated risk of harm and possible death for their child. Furthermore, families report being turned away or refused services when they do attempt to utilize them. In addition, current COVID-19 guidelines recommend providers against referring patients to the emergency room unless they meet very strict criteria.
A child’s eligibility should not be dependent upon a family’s ability to access services. We recommend a better metric for assessing child behavior be used to determine eligibility for the Katie Beckett Program.
(3)(a)2. Tier 2 Institutional LOC - Standard 1: Medical Section
(II) V. “Intensive therapy services shall include only medically necessary physical, occupational, or speech therapy provided by a licensed professional
therapist and shall apply only if the child is involved in six or more sessions per week with professional therapists.”
We are concerned that the approved therapy services are limited to physical, occupational and speech therapy. Additional medically necessary therapies routinely prescribed for children with complex needs such as feeding therapy and Applied Behavior Therapy should be included. Equally concerning is the designation that therapies apply only if the child is involved in six or more sessions per week. This may exclude children in need for several reasons.
- Children with complex needs reach limits on covered therapy visits early in the year. Due to large costs and mounting debt, their needs are often greater than services received. Therapies are staggered and/or paused to limit concurrent out of pocket costs.
- Many services are unavailable in certain areas or have long waiting lists. Outside of our metropolitan areas, it may not be possible to meet six or more sessions per week.
- Many families have stopped services for medically fragile children and children I/DD to limit exposure to COVID-19, as well as flu and cold season.
- Family capacity may not allow for a child’s therapy/service needs to be fully met.
Qualified provider prescriptions for therapy or treatment should be the basis of eligibility not weekly attendance.
(3)(a) 2. Tier 2 institutional LOC.
(III)(III) Self-Care: The child must demonstrate a deficit in at least one of the following five areas of self-care: A. Bathing B. Grooming C. Dressing D. Toileting E. Eating
If a child exhibits deficits in multiple of the self-care activities of daily living identified above, this shall still be counted as one substantial functional limitation (in self-care).
The aspects of self-care described in this definition are diverse and require different functional abilities to be performed. Deficits in multiple of the self-care activities of daily living should be counted as their own substantial functional limitations.
1200-12-01.32 TennCare Katie Beckett Program
(8) (a) For a child enrolled in Katie Beckett Group Part A, the expenditure cap shall be fifteen thousand dollars ($15,000) per calendar year. The Expenditure Cap shall apply to Katie Beckett wraparound HCBS only (not other Medicaid services). All Katie Beckett Group Part A wraparound HCBS shall be counted against the Expenditure Cap, including the cost of minor home modifications.
Minor home modifications can make the difference between a child’s ability to receive services in their own home and having no choice but institutionalization. However, they can be quite expensive. It is unfair to force a parent to choose between essential home modifications and other home-and community-based services (HCBS) their child needs. The Employment and Community First CHOICES Program has removed this burden by excluding minor home modifications from its expenditure cap. The Katie Beckett Program should follow suit.
(9) Consumer Direction (CD).
(b)6. (v) Any money remaining in a child’s monthly budget for Supportive Home Care or Community Transportation at the end of a month shall not be carried over to the next month, and cannot be used to purchase units of service in any other month.
(b)6. (vi) Any money remaining in a child’s annual budget for hourly Respite at the end of the calendar year shall not be carried over to the next year, and cannot be used to purchase additional units of service in a subsequent calendar year.
Complex medical needs are often characterized by changes in health status. Therefore a child’s needs and the family’s capacity to access services may vary month to month. Prospective monthly budgets fail to account for this variability that is part of life for these families. In normal times, a family may also experience a one-time need, for example should a parent require surgery or become ill. In the time of the pandemic, should a parent contract COVID-19, he or she may have to be isolated from the child for an extended period. Additionally, because of high community infection rates, paid caregivers are difficult to find. Disallowing carryover removes family agency and is antithetical to a family-centered approach.
(9) Consumer Direction (CD)
(b)7. (iii) (II) A child’s parent or legal guardian who elects to receive the child’s Respite through CD shall receive up to 216 hours per year of Respite services. (Daily Respite shall not be available through CD.)
The program already defines a cap on the amount of home-and community-based services allowable for each child. The inclusion of an arbitrary maximum number of allowable respite services is unnecessary and removes agency from the parent who has elected consumer direction. This undermines the family-centered intent of the program.
The Coalition is appreciative of the hard work of the Bureau of TennCare to operationalize the Katie Beckett Program. Especially its efforts to reflect stakeholder input that a family-centered approach will be essential to fulfill the intent of this program. In order for those efforts to bear fruit, the rules to carry out the Katie Beckett Program must include agency for families and greater flexibility to assess and to serve the unique needs of children with complex medical needs and significant disabilities.
We hope that the concerns we have shared from our community will be addressed for the children and families who need this program in Tennessee. Thank you for the opportunity to share our comments on rulemaking for this program and for the work that you do.
The period to accept public comments ended on Monday, January 11th, 2021.
The draft rules are available at:
https://publications.tnsosfiles.com/rules_filings/11-15-20.pdf
https://publications.tnsosfiles.com/rules_filings/11-16-20.pdf