I 

113TH CONGRESS 

2D SESSION H. R. 5633 

To authorize grants for the support of caregivers. 

IN THE HOUSE OF REPRESENTATIVES 

SEPTEMBER 18, 2014 

Mr. PASCRELL introduced the following bill; which was referred to the 

Committee on Energy and Commerce 

A BILL 

To authorize grants for the support of caregivers. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘In-Home Caregiver 

5 Assessment Resources and Education Act’’ or the ‘‘In6 Home CARE Act’’. 

7 SEC. 2. FINDINGS. 

8 Congress finds the following: 

9 (1) More than 65,000,000 unpaid caregivers 

10 provide care for a chronically ill, disabled, or aged 

11 family member or friend during any given year. 


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1 (2) Sixty-six percent of unpaid caregivers are 

2 women. More than 37 percent of caregivers live with 

3 children or grandchildren who are under 18 years 

4 old. 

5 (3) Unpaid family caregivers spend an average 

6 of 20 hours per week caring for their loved ones, 

7 and 13 percent of family caregivers provide 40 or 

8 more hours of care per week. 

9 (4) Thirty-six percent of caregivers care for a 

10 parent. 

11 (5) Fourteen percent of caregivers care for a 

12 special needs child, including an estimated 

13 16,800,000 caregivers who care for special needs 

14 children who are under 18 years old. 

15 (6) In 2007, the average caregiver for someone 

16 50 years or older spent $5,531 per year on out-of17 pocket caregiving expenses, which is more than 10 

18 percent of the median income for a family caregiver 

19 for that year. Forty-seven percent of working care20 givers have used up all or most of their savings due 

21 to caregiving expenses. 

22 (7) Seventy-three percent of caregivers who pro23 vide care for an individual over the age of 18 are 

24 currently working or have worked while providing 

25 care. Sixty-six percent of such caregivers have had 


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1 to make some modifications to their work schedule, 

2 from arriving late to work to leaving their job en3 tirely. One in 5 caregivers have had to take time off 

4 from work. 

5 (8) Fifty-three percent of caregivers have expe6 rienced a decline in their health as a result of 

7 caregiving, which has affected their ability to provide 

8 care. 

9 (9) Forty-six percent of caregivers perform 

10 medical or nursing tasks for patients with multiple 

11 physical and chronic conditions. Of these caregivers, 

12 78 percent were in charge of managing a patient’s 

13 medications, administering fluids, or administering 

14 injections. 

15 (10) Nearly 20 percent of caregivers who as16 sisted with medication management and 33 percent 

17 who assisted with changing dressings or bandages 

18 received no training about how to perform these 

19 tasks. 

20 (11) The vast majority (78 percent) of care21 givers indicated they need more support related to 

22 caregiving. 

23 (12) Home visiting programs are cost-effective 

24 and have been proven to improve outcomes for chilVerDate Sep 11 2014 00:40 Oct 03, 2014 Jkt 049200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H5633.IH H5633

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1 dren and parents in different domains ranging from 

2 child development to family violence. 

3 SEC. 3. PURPOSES. 

4 The purposes of this Act are— 

5 (1) to improve the ability of unpaid caregivers 

6 to care for individuals in the home; and 

7 (2) to increase opportunities for individuals who 

8 are in need of care to remain at home and reduce 

9 or postpone the need for such individuals to receive 

10 care at an institution. 

11 SEC. 4. CAREGIVER GRANTS. 

12 Subpart IV of part D of title III of the Public Health 

13 Service Act (42 U.S.C. 255 et seq.) is amended by adding 

14 at the end the following: 

15 ‘‘SEC. 339A. CAREGIVER GRANTS. 

16 ‘‘(a) IN GENERAL.—The Secretary, acting through 

17 the Administrator of the Administration for Community 

18 Living, shall award 3-year grants, on a competitive basis, 

19 to eligible organizations to carry out home visiting pro20 grams for unpaid caregivers. 

21 ‘‘(b) DEFINITIONS.—In this section: 

22 ‘‘(1) CAREGIVER.—The term ‘caregiver’ means 

23 an unpaid family member, foster parent, or other 

24 unpaid adult who provides in-home monitoring, man25 agement, supervision, or treatment of a child or 


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1 adult with a special need, such as a disease, dis2 ability, or the frailties of old age. 

3 ‘‘(2) CAREGIVER ASSESSMENT.—The term 

4 ‘caregiver assessment’ means an assessment that in5 cludes talking directly to caregivers to better under6 stand their needs, problems, resources, and 

7 strengths. 

8 ‘‘(3) CHILD OR ADULT WITH A SPECIAL

9 NEED.—The term ‘child or adult with a special need’ 

10 means an individual for whom care or supervision is 

11 required to— 

12 ‘‘(A) meet the basic needs of the indi13 vidual; 

14 ‘‘(B) prevent physical self-injury or injury 

15 to others; or 

16 ‘‘(C) avoid placement in an institutional 

17 facility. 

18 ‘‘(4) ELIGIBLE ORGANIZATION.—The term ‘eli19 gible organization’ means— 

20 ‘‘(A) a local government agency; 

21 ‘‘(B) a health care entity; or 

22 ‘‘(C) any other nonprofit or community or23 ganization, 

24 that can provide the services described in subsection 

25 (f). 


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1 ‘‘(c) COORDINATION.—In carrying out this section, 

2 the Secretary shall coordinate— 

3 ‘‘(1) with the heads of the National Family 

4 Caregiver Support Program of the Administration 

5 on Aging and other programs within the Depart6 ment of Health and Human Services (such as the 

7 Lifespan Respite Care Program), to ensure coordi8 nation of caregiver services for caregivers of children 

9 or adults with special needs; and 

10 ‘‘(2) with the Director of the Centers for Medi11 care & Medicaid Services to avoid duplicative serv12 ices and payments. 

13 ‘‘(d) APPLICATION.—An eligible organization that de14 sires a grant under this section shall submit an application 

15 at such time, in such manner, and containing such infor16 mation as the Secretary may require, including, at a min17 imum— 

18 ‘‘(1) an outreach plan that identifies how the el19 igible organization will ascertain which caregivers in 

20 the community— 

21 ‘‘(A) are most in need of support and edu22 cation, particularly caregivers who have had no 

23 training and provide complex chronic care ac24 tivities or perform medical or nursing tasks in 


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1 addition to assisting with activities of daily liv2 ing; 

3 ‘‘(B) are caring for individuals who are at 

4 the greatest risk of needing institutional care; 

5 and 

6 ‘‘(C) desire to participate in the caregiver 

7 home visiting program; 

8 ‘‘(2) a description of the services that the eligi9 ble organization will provide directly using grant 

10 funds, and a description of the services that the eli11 gible organization will use grant funds to provide 

12 through contracts or referrals; 

13 ‘‘(3) a description of how the eligible organiza14 tion will identify gaps in the services that caregivers 

15 and children or adults with a special need who re16 ceive care from a caregiver in the community are re17 ceiving; 

18 ‘‘(4) a description of how the eligible organiza19 tion can provide— 

20 ‘‘(A) an initial visit to caregivers in order 

21 to complete a caregiver assessment, including a 

22 description of the eligible organization’s exper23 tise in conducting caregiver assessments; 

24 ‘‘(B) education and training to help the 

25 caregiver learn how to best care for a child or 


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1 adult with a special need, by an individual with 

2 expertise in the tasks for which the caregiver 

3 requires education and training, including edu4 cation and training regarding, as applicable— 

5 ‘‘(i) medication management; 

6 ‘‘(ii) wound care; 

7 ‘‘(iii) nutrition and food preparation 

8 for special diets; 

9 ‘‘(iv) falls prevention; 

10 ‘‘(v) management of depression, anx11 iety, stress, and other behavioral health 

12 conditions, including ways to minimize 

13 negative mental health effects; 

14 ‘‘(vi) assistance with activities of daily 

15 living; 

16 ‘‘(vii) ways to engage other family 

17 members in providing care; 

18 ‘‘(viii) ways to identify and utilize 

19 available community resources; and 

20 ‘‘(ix) abuse and neglect prevention; 

21 and 

22 ‘‘(C) recommendations for home modifica23 tions or physical environmental changes that 

24 will improve the health or quality of life of a 


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1 child or adult with a special need who is receiv2 ing care from a caregiver; 

3 ‘‘(5) a description of the eligible organization’s 

4 ability to provide, or refer caregivers to local re5 sources or programs of the Department of Health 

6 and Human Services that will provide— 

7 ‘‘(A) physical and mental health care, in8 cluding home health care and long-term support 

9 services; 

10 ‘‘(B) transportation; 

11 ‘‘(C) home modification services; 

12 ‘‘(D) respite care; 

13 ‘‘(E) adult day care; 

14 ‘‘(F) support groups; and 

15 ‘‘(G) legal assistance; 

16 ‘‘(6) a description of the eligible organization’s 

17 ability to coordinate with other State and commu18 nity-based agencies; 

19 ‘‘(7) a description of the eligible organization’s 

20 understanding of caregiver issues— 

21 ‘‘(A) across age groups; and 

22 ‘‘(B) including disabilities and chronic con23 ditions that affect the populations that the eli24 gible organization will serve; 


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1 ‘‘(8) a description of the capacity of the eligible 

2 organization to engage caregivers, family members, 

3 and children or adults with a special need who re4 ceive care from a caregiver; and 

5 ‘‘(9) with respect to the population of caregivers 

6 to whom caregiver visits or services will be provided, 

7 or for whom workers and volunteers will be recruited 

8 and trained, a description of— 

9 ‘‘(A) the population of caregivers; 

10 ‘‘(B) the extent and nature of the needs of 

11 that population; and 

12 ‘‘(C) existing caregiver services for that 

13 population, including the number of caregivers 

14 served and the extent of unmet need. 

15 ‘‘(e) PRIORITY.—In awarding grants under this sec16 tion, the Secretary shall give priority to eligible organiza17 tions that— 

18 ‘‘(1) the Secretary determines show the greatest 

19 likelihood of implementing or enhancing caregiver 

20 home visiting services for the greatest number of 

21 people; 

22 ‘‘(2) will allow caregivers to contact the eligible 

23 organization by phone, email, or two-way interactive 

24 video after home visits have ended or if a caregiver 

25 has questions or concerns; 


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1 ‘‘(3) have a proven record of caregiver support; 

2 ‘‘(4) will use evidence-based programs; or 

3 ‘‘(5) will provide matching funds or can dem4 onstrate that the program funded by a grant under 

5 this section will be sustainable after grant funds are 

6 no longer provided. 

7 ‘‘(f) AUTHORIZED ACTIVITIES.—An eligible organiza8 tion receiving a grant under this section shall use grant 

9 funds to— 

10 ‘‘(1) conduct an initial home visit for each care11 giver participating in the program, during which a 

12 representative from the eligible organization who has 

13 expertise in care management and caregiving will 

14 perform a caregiver assessment and determine what 

15 follow-up services may benefit the caregiver and the 

16 child or adult with a special need who receives care 

17 from the caregiver; 

18 ‘‘(2) conduct home visits for the purpose of 

19 caregiver education and training; 

20 ‘‘(3) provide, or provide referrals for, the serv21 ices described in subsection (d)(5); 

22 ‘‘(4) provide an assessment and referral for 

23 physical and mental health services for the caregiver 

24 and for the child or adult with a special need who 

25 receives care from the caregiver, as needed; and 


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1 ‘‘(5) carry out any other activities that are de2 scribed in the grant application submitted under 

3 subsection (d). 

4 ‘‘(g) TECHNICAL ASSISTANCE CENTER.—The Sec5 retary shall establish or contract to establish a technical 

6 assistance center through which the Secretary shall— 

7 ‘‘(1) provide models for programs funded by 

8 grants under this section; 

9 ‘‘(2) provide training for grantees; 

10 ‘‘(3) answer questions from grantees; and 

11 ‘‘(4) facilitate an exchange of information 

12 among grantees, and between grantees and other 

13 programs within the Department of Health and 

14 Human Services, including through use of the Tech15 nical Assistance Exchange of the Administration for 

16 Community Living, in order to maximize the use of 

17 existing resources and services for caregivers and to 

18 avoid the duplication of such services. 

19 ‘‘(h) EVALUATION.— 

20 ‘‘(1) IN GENERAL.—Not later than 1 year after 

21 the date of enactment of this section, and annually 

22 thereafter, the Secretary shall evaluate the success 

23 of the grant program carried out under this section, 

24 based on criteria that the Secretary may develop for 

25 such evaluation. 


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1 ‘‘(2) OPTIONAL CONTENTS OF EVALUATION.— 

2 The evaluation described in paragraph (1) may in3 clude an evaluation of— 

4 ‘‘(A) the extent to which children or adults 

5 with a special need who are cared for by a par6 ticipating caregiver have— 

7 ‘‘(i) a reduction in the potential num8 ber of hospitalizations; 

9 ‘‘(ii) a reduction in the potential num10 ber of institutionalizations; 

11 ‘‘(iii) cost reductions across the health 

12 care system; 

13 ‘‘(iv) improved care; and 

14 ‘‘(v) improved quality of life (includ15 ing a reduction of stress and anxiety and 

16 improved relationships and mood); and 

17 ‘‘(B) the extent to which participating 

18 caregivers have improved quality of life (includ19 ing a reduction of stress and anxiety and im20 proved health, relationships, and mood). 

21 ‘‘(i) REPORTS AND RECOMMENDATIONS.—Not later 

22 than 1 year before the expiration of the grants awarded 

23 under this section, the Secretary shall prepare and submit 

24 a report to Congress that includes recommendations, 


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1 based on the evaluation described in subsection (h), 

2 about— 

3 ‘‘(1) changes to the grant program under this 

4 section; 

5 ‘‘(2) the potential for expanding the number 

6 and scope of caregiver home visiting program grants 

7 distributed by the Secretary; and 

8 ‘‘(3) extending the length of the grant program. 

9 ‘‘(j) AUTHORIZATION OF APPROPRIATIONS.—There 

10 are authorized to be appropriated to carry out this section 

11 such sums as may be necessary.’’. 

Æ 


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