Nebraska LB 1261: Adopt the Amyotrophic Lateral Sclerosis Respite Services Act

Bill Text

LEGISLATURE OF NEBRASKA
ONE HUNDRED EIGHTH LEGISLATURE
SECOND SESSION
LEGISLATIVE BILL 1261

Introduced by Walz, 15.
Read first time January 16, 2024
Committee: Health and Human Services
A BILL FOR AN ACT relating to public health and welfare; to adopt the1
Amyotrophic Lateral Sclerosis Respite Services Act.2
Be it enacted by the people of the State of Nebraska,3
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Section 1. Sections 1 to 8 of this act shall be known and may be1
cited as the Amyotrophic Lateral Sclerosis Respite Services Act.2
Sec. 2. The Legislature finds that:3
(1) Supporting the efforts of families and caregivers that care for4
individuals with amyotrophic lateral sclerosis is efficient, cost5
effective, and humane;6
(2) Respite services reduce family and caregiver stress, enhance7
family and caregiver coping ability, and strengthen the ability of family8
and caregivers to meet the challenging demands of caring for family9
members with amyotrophic lateral sclerosis; and10
(3) Coordinated respite services must be available to provide11
reliable services when needed by families and caregivers in Nebraska.12
Sec. 3. For purposes of the Amyotrophic Lateral Sclerosis Respite13
Services Act:14
(1) Caregiver means an individual providing ongoing care for an15
individual diagnosed with amyotrophic lateral sclerosis;16
(2) Department means the Department of Health and Human Services;17
(3) Provider means an individual or agency selected by a family or18
caregiver to provide respite services to an individual with amyotrophic19
lateral sclerosis;20
(4) Respite care means the provision of short-term relief to primary21
caregivers from the demands of ongoing care for an individual with22
amyotrophic lateral sclerosis and includes: (a) Identifying local23
training resources and organizing training opportunities for respite care24
providers; (b) linking families and caregivers with payment resources;25
(c) quality assurance and evaluation; and (d) assisting families and26
caregivers to identify respite care needs and resources; and27
(5) Respite services program means a program that: (a) Is operated28
by a private nonprofit organization or a public agency that provides29
respite services and comprehensive patient services and support to the30
amyotrophic lateral sclerosis community; (b) receives funding through the31
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Amyotrophic Lateral Sclerosis Respite Services Program established under1
the act; (c) acts as a local resource for respite services information2
and referral; and (d) facilitates access to local respite services.3
Sec. 4. (1) The department shall establish the Amyotrophic Lateral4
Sclerosis Respite Services Program to develop and encourage statewide5
coordination of respite services and work with a community-based private6
nonprofit organization that (a) operates statewide, (b) is affiliated7
with a national organization, and (c) provides care to individuals with8
amyotrophic lateral sclerosis.9
(2) The Amyotrophic Lateral Sclerosis Respite Services Program10
shall:11
(a) Provide policy and program development support, including, but12
not limited to, data collection and outcome measures;13
(b) Provide technical assistance to community respite services14
programs;15
(c) Develop and distribute respite services information;16
(d) Promote the exchange of information and coordination among state17
and local governments, community respite services programs, agencies18
serving individuals with amyotrophic lateral sclerosis, families, and19
respite care advocates to encourage efficient provision of respite20
services and reduce duplication of effort;21
(5) Ensure statewide access to community respite services programs;22
and23
(6) Monitor and evaluate implementation of community respite24
services programs.25
Sec. 5. (1) The department shall coordinate the establishment of26
community respite services programs. The programs shall accept proposals27
submitted in the form and manner approved by the department from28
community-based private nonprofit organizations, as described in section29
4 of this act, to operate community respite services programs. Pursuant30
to criteria established by the department, the Amyotrophic Lateral31
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Sclerosis Respite Services Program shall designate and fund agencies1
described in the Amyotrophic Lateral Sclerosis Respite Services Act to2
operate community respite services programs.3
(2)(a) The department shall award grants as provided in subdivision4
(b) of this subsection to any nonprofit organization that (i) is5
organized under section 501(c)(3) of the Internal Revenue Code of 1986,6
as amended, (ii) has the ability to operate statewide, (iii) is7
affiliated with a national organization, and (iv) has an agreement with8
providers of respite care that meets the requirements of the Amyotrophic9
Lateral Sclerosis Respite Services Act.10
(b) The department shall award grants, up to the amount appropriated11
to the department for the