BILL NUMBER: S4462
SPONSOR: MAYER
 
TITLE OF BILL:
An act relating to complex care assistants and home care services and
supplementing
 
PURPOSE OR GENERAL IDEA OF BILL:
Authorizes New York State to allow family members of medically fragile
child(ren) to be trained and paid to provide care as complex care
assistants
 
SUMMARY OF PROVISIONS:
Section 1 sets out applicable definitions.
§ 2. Provides that the state Medicaid director within the New York State
Department of Health shall establish the program pursuant to this act;
sets out training and certification requirements for a family member to
become a complex care assistant or complex care technical assistant;
establishes rates of pay and provisions for rate increases; and sets out
reporting requirements.
§ 3. Directs the state Medicaid director to adopt rules and regulations
necessary for implementation.
§ 4. Requires the state Medicaid director to apply for all plan amend-
ments and waivers to implement this act and secure federal financial
participation for state Medicaid expenditures.
§ 5. Sets the effective date.
 
JUSTIFICATION:
Since the COVID-19 pandemic, the home health care staffing shortage has
reached crisis levels. Nowhere is this felt more than by parents of
medically fragile children who require a private duty nurse to attend to
their children's daily needs. Currently 50 to 70% of private duty nurs-
ing shifts in the U.S. go unfilled.1
According to the 2019-20 New York State Profile of Children and Youth
with Special Health Care Needs (CYSHCN), defined as "children who have
or are at increased risk for a chronic physical, developmental, behav-
ioral, or emotional condition and who also require health and related
services of a type or amount beyond that required by children general-
ly"2:
Families of CYSHCN face more financial strain and spend more time coor-
dinating their child's care than families without a CYSHCN. One in 10
families with CYSHCN reported spending at least one hour per week coor-
dinating their child's health care. Families of CYSHCN were more likely
to reduce or stop working due to their child's health, have high out-of-
pocket medical expenses, and have problems paying medical bills. Nine-
ty-nine percent of NYS CYSHCN have health insurance coverage all year;
however, families of CYSHCN were less likely to have adequate health
insurance or insurance benefits that meet their child's needs.3
According to a 2019 analysis in Health Affairs,
Parents of chronically ill children are less likely to work more than
twenty hours per week and more likely to participate in casual than in
regular employment compared to parents with otherwise healthy children.
A national survey of family caregivers of children with a rare disease
reported that 52 percent of family members had to go to part-time work
or cut hours, 42 percent took a leave of absence, 31 percent turned down
a promotion, 23 percent lost a job benefit, and 21 percent gave up work-
ing or retired early to meet the care needs of their children.4
Currently, the money allocated by the state for private duty nursing is
not being utilized by providers because of a severe staffing shortage of
private duty nurses. Many parents must leave employment to ensure care
for their children, resulting in even more financial hardship for these
families.
New York's Medicaid program currently permits eligible adults to be
cared for by a family member, but does not permit care of medically
fragile children by a family member. To ensure the safety and quality of
life for such children and their families, it is time for New York State
to allow family members to be certified and paid to provide this neces-
sary care.
 
PRIOR LEGISLATIVE HISTORY:
2023-2024: S8599/A9034, Referred to Health
 
FISCAL IMPLICATIONS:
To be determined.
 
EFFECTIVE DATE:
This act shall take effect immediately.
1 Private Duty Nursing Makes Community Living Possible. Advocacy by The
Arc, May 15, 2023, available at https://thearc.org/blog/private-duty-
nursing-makes-community-living-possible-how-you-can-help/
2 New York State Profile of Children and Youth with Special Health Care
Needs, 2019-2020, available at https://www.health.ny.gov/community
/special_needs/docs/cshcn_profile_2019-20.pdf
3 Id at 5.
4 Home Health Care For Children With Medical Complexity: Workforce Gaps,
Policy, And Future Directions 1 Health Affairs, Vol. 3 No. 6, June 2019
, available at
https://www.healthaffairs.org/doi/10.1377/hlthaff.2018.05531