Caregiver Programs in New York: A Complete Directory

You're a New York caregiver. You know you need help. You don't yet know what to call it.

That is the most honest sentence we can write at the top of a directory page. By the time most New Yorkers find their way to a guide like this, something has already happened. A hospital said the word "discharge." A neurologist said the word "Alzheimer's." A school called about a grandchild. A spouse fell. A son called from a Bronx ER. The work of caring has already started; what's missing is the map.

This is the master directory. It covers every meaningful caregiver program in New York in 2026: the nine pathways that can pay a family member as a caregiver, the nine streams of respite, the front doors at NY Connects and 211, the dementia infrastructure (CEADs, ADCSI, GUIDE), the kinship system, the federal VA stack, the tax treatment, and the cross-cutting programs, MBI-WPD, HIICAP, EPIC, MOLST, FHCDA, that don't have their own deep guides yet. Each section is short on its own and links to the deeper article when one exists.

You don't have to figure this out alone. You don't have to fund all of it out of savings. And the most important phone number in this guide is one you can call this afternoon.

That number is NY Connects: 1-800-342-9871 (Monday–Friday, 8:30 a.m.–5 p.m.; 211 routes after hours). Save it before you read further.

By Brevy Care Team · Last verified May 5, 2026

In This Guide

• Programs at a Glance
• Programs That Pay Family Caregivers
• Respite Care Programs
• Front Doors: NY Connects, 211, and the AAA Network
• Dementia-Specific Caregiver Supports
• Kinship Caregiver Programs
• Crisis Lines and Reporting
• Tax Treatment of Caregiver Income
• Cross-Cutting Programs Most Caregivers Miss
• Statute and Regulation Crosswalk
• Pending NY Legislation in 2026
• Federal Threats Through 2028
• Common Myths
• Resources
• Frequently Asked Questions
• What to Read Next

Programs at a Glance

This is the centerpiece. Bookmark it. The table covers thirty programs grouped by what they actually do, pay you, give you a break, route you, treat dementia, support kinship, handle crisis, and shape your taxes. Statutory authorities and 2026 figures are cited so a clinician, a social worker, or another guide can verify them quickly.

A note before we dive into each category. New York runs more long-term-care infrastructure than almost any other state. That is good news, but it also means programs cluster into nine, ten, sometimes fifteen overlapping offerings, three different respite vouchers, four different Medicaid pay-the-family pathways, ten dementia centers, sixteen GUIDE participants, fifty-nine AAAs. The temptation, as a caregiver, is to drown. The discipline of this directory is the opposite: pick the one program that fits your situation today, and call one phone number to start. The rest will unfold.

Programs That Pay Family Caregivers

For the full walkthrough, eligibility, application, hourly rates, the spouse rules, the 22 OHIP/ADM-01 IRP review trigger at 12+ hours/day, and the difference between every pathway, read How to Get Paid as a Family Caregiver in New York. Here is the high-level map of nine pathways.

1. Consumer Directed Personal Assistance Program (CDPAP)

CDPAP is the largest consumer-directed Medicaid caregiver program in the United States, about 280,000 active consumers as of NYSDOH testimony to the Senate Aging Committee on February 12, 2026. It lets a Medicaid recipient hire and supervise a Personal Assistant of their own choosing, including most family members, and pays that PA as a W-2 employee through a single Fiscal Intermediary, Public Partnerships LLC (PPL), which has been the sole statewide FI since April 1, 2025.

2026 wage rates (effective 1/1/2026, NY DOL Home Care Aide Minimum Wage Fact Sheet P105 plus PHL § 3614-c wage parity):

• NYC: $20.65 base + $2.54 wage parity = $23.19/hr
• Long Island & Westchester: $20.05 base + $1.67 parity = $21.72/hr
• Rest of State: $18.65/hr flat

Key rules: spouses of consumers cannot be paid (a NY state-law choice under Soc. Serv. Law § 365-f(2)(c), federal law at 42 USC § 1396n(j)(4) explicitly permits paying legally responsible relatives; NY simply doesn't elect that option). Parents of consumers under 21 cannot be paid; parents of adult children 21+ may serve as paid PAs under Chapter 511 of the Laws of 2015. A Designated Representative cannot also be a paid PA. Cases hitting 12+ hours per day trigger Independent Review Panel review under 22 OHIP/ADM-01, that is a medical-necessity check, not a 60-hour-per-week cap (the cap is mythological).

PPL contact: 1-833-247-5346, M–F 8–8 ET. The transition to single-FI status was litigated in Engesser v. McDonald, 1:25-cv-01689 (E.D.N.Y., Hon. Frederic Block), final settlement October 3, 2025.

2. Personal Care Services (PCS)

The vendor-agency cousin of CDPAP. Soc. Serv. Law § 367-q; 18 NYCRR § 505.14. A licensed home-care agency hires the aide and the agency may employ a relative (not a spouse for Medicaid funding without OPWDD Self-Direction). Level I (housekeeping) is capped at 8 hours per week; Levels II/III require nursing-facility level of care. Most PCS hours are coordinated through MLTC plans.

3. NHTD Waiver (Currently Frozen)

The Nursing Home Transition and Diversion 1915(c) waiver (NY.0444) serves adults 18–64 with physical disability and adults 65+ who meet nursing-facility level of care. Enrollment is currently FROZEN at 9,400, CMS approved the cap amendment on November 23, 2025. NYSDOH has suspended new referrals and chose not to maintain a formal waitlist. NHTD does not allow participant direction; families that historically would have used NHTD now layer CDPAP + MLTC + 1915(k) Community First Choice + PCS as a workaround.

4. TBI Waiver

The Traumatic Brain Injury 1915(c) waiver (NY.0269.R05.00, effective 9/1/2022 through 8/31/2027) serves adults 18+ with documented TBI who meet NF-LOC. Service coordination, structured day, behavioral programs, respite (30 days/yr cap, provider-delivered), and home/community support. No participant direction.

5. OPWDD Waivers

Three OPWDD pathways serve people with developmental disability originating before age 22: the Comprehensive HCBS waiver (NY.0238.R07.00), the consolidated Children's Waiver (NY.4125.R06.03 effective 4/1/2026), and the ICF/IID State Plan service. The detail families miss: OPWDD's Self-Direction Family Reimbursed Respite up to $3,000/year (100% State funds) is the only Medicaid family-reimbursement respite pathway in New York. OPWDD Front Door: 1-866-946-9733.

6. EISEP (Expanded In-Home Services for the Elderly Program)

NY Elder Law § 214, 100% state-funded; county-AAA-administered; sliding-scale cost-share for adults 60+ above Medicaid; consumer-directed option in select counties. The respite component is delivered through Social Adult Day Care or in-home aides. EISEP is the most-used non-Medicaid in-home service in New York.

7. NY Paid Family Leave

WCL Article 9 §§ 200–242, effective 1/1/2018 with annual rate updates from the New York State Department of Financial Services. 2026 figures from the NYS DFS Decision and Order issued November 14, 2025:

• 12 weeks per 52-week period
• 67% of weekly wage
• Cap: $1,228.53/week (67% of NYSAWW $1,833.63)
• Employee contribution rate: 0.388%
• Maximum annual employee contribution: $354.53

Eligibility: 26 weeks at 20+ hours/week, or 175 days at <20 hours/week. Eligible relationships, after the 2023 expansion via Chapter 720 of the Laws of 2021: spouse, domestic partner, child of any age, parent and parent-in-law, grandparent, grandchild, sibling. Not eligible: aunt/uncle, niece/nephew, sibling-in-law, chosen-family designated person, though pending bill A.6492 (Joyner) / S.4267 (Ramos), MPA Proposal #58, would expand to designated person and broaden chosen-family recognition.

Job restoration is mandated under WCL § 203-b; health-insurance continuation under 12 NYCRR § 380-9. The most important caveat: PFL pays for time off; it does not pay for caregiving labor. It is wage replacement, not a caregiver salary. PFL Helpline: 1-844-337-6303.

8. NY Disability Benefits Law (DBL)

WCL Article 9 §§ 200–217. Statutory $170/week maximum (not indexed). For your own non-occupational disability, but the combined PFL+DBL cap is 26 weeks in any 52-week period.

9. The VA Stack (Four Pathways, One Phone Number)

For caregivers of veterans, a parallel benefit stack runs alongside the NY system. The single starting point is the VA Caregiver Support Line: 1-855-260-3274 (M–F 8 a.m.–10 p.m. ET; Saturdays 8–5).

• PCAFC (38 USC § 1720G(a); 38 CFR Part 71), 2026 monthly stipends approximately Tier 1 $1,925, Tier 2 $3,206, tax-free. Includes CHAMPVA insurance, counseling, respite, training, and mental-health services. Open to all eras since the post-PACT-Act final rule. Spouses are eligible as primary caregiver. Legacy participant transition deadline extended to September 30, 2028 by VA Final Rule 90 FR 47891 (9/29/2025), about 3,400 NY legacy participants face that transition cliff.
• PGCSS (38 USC § 1720G(b)), peer support, training, self-care; respite cumulative with PCAFC at ≥30 days/year per veteran. No stipend.
• Veteran-Directed Care (VDC) (38 USC §§ 1701, 1710B; ACL-administered), a flexible monthly budget of roughly $1,500–$3,000+ the veteran can spend on family-chosen caregivers (sometimes including spouses). Available at NY VAMCs in the Bronx, NY Harbor (Manhattan/Brooklyn/St. Albans), Northport, Albany Stratton, Syracuse, and Western NY (Buffalo).
• Aid & Attendance pension (38 USC §§ 1521, 1541; 38 CFR Part 3), 2026 MAPRs ~$29,094 single vet / ~$34,496 vet + one dependent / ~$18,696 surviving spouse, with the net-worth limit at $163,699 (38 CFR § 3.274) and a 3-year asset look-back (38 CFR § 3.276). Always apply through a County Veterans Service Officer or accredited VSO. Never pay a "pension consultant", charging a fee for VA pension assistance is a felony under 38 USC § 5905.

Respite Care Programs

There is no single "NY respite program." There are nine streams. The respite article, Respite Care in New York, has the full decision tree by age, diagnosis, Medicaid status, and county. The headline map:

1. NFCSP / Title III-E (42 USC §§ 3030s–3030s-2). Channeled by NYSOFA through 59 AAAs. Federal share 75%. Eligible: caregivers of any-age person with ADRD, caregivers of 60+, and 55+ relative caregivers of children or 18–59 disabled adults. Per NYSOFA 22-PI-15 and 23-PI-04.
2. NYSCRC Lifespan Respite voucher, federal Lifespan Respite Care Act (42 USC § 254c-13). NY administers up to $600 per first-time approved caregiver applicant, payable to hired family/friends. Lifespan of Greater Rochester runs the program for the NYS Caregiving and Respite Coalition: 1-585-244-8400.
3. NYSOFA State Respite Program, state general fund; not Title III-E. Six grantees serving 23 historical counties plus 4 added under MPA Proposal #54 (Erie, Oneida, Niagara, Rockland) effective 4/1/2026. FY 2027 enacted at $8.6M covering 27 counties.
4. 17 NYSOFA Caregiver Resource Centers, counseling, training, support groups, voucher administration. Per NYSOFA TAM 23-04, AAAs may operate Caregiver-Directed Respite where the caregiver receives a voucher and selects providers including family/friends. Geriatric Care Manager pilot at 4 CRCs (Monroe, Onondaga, Westchester, Nassau).
5. EISEP, Elder Law § 214; respite delivered through SADC or in-home aides; sliding fee.
6. Medicaid 1915(c) waiver respite, NHTD (30-day cap; enrollment frozen); TBI (30-day cap); OPWDD Comprehensive (planned, crisis, site-based, in-home, and the $3,000/yr Self-Direction Family Reimbursed Respite); Children's Waiver (planned and crisis respite).
7. MLTC supplemental respite, PHL § 4403-f. Plan-discretionary; not a guaranteed benefit. Some MLTC plans authorize up to 15 days/yr inpatient or home-based respite beyond State Plan.
8. OMH Crisis Residence, transitioned from BH HCBS Crisis Respite to OMH Crisis Residence state-plan service effective 7/1/2024. Access via HARP plan or designated Crisis Residence operator.
9. Medicare hospice short-term inpatient respite (42 CFR § 418.108(b)), 5 consecutive days at a Medicare-certified facility, reusable per benefit period subject to IDG approval, NOT once a year. FY 2026 inpatient respite per-diem rate is approximately $473/day; 5% beneficiary coinsurance is capped at the 2026 inpatient hospital deductible ($1,736). Wildly underused, about 25% of US hospice admissions have ADRD primary diagnosis per NHPCO 2024 Facts and Figures.
10. VA respite, PCAFC + PGCSS combined ≥30 days/yr per veteran across home-based, adult day, inpatient, and homemaker/HHA modalities under 38 CFR § 71.40(c)(2)(iii).
11. GUIDE Model dementia respite, separate from the above, $2,500/yr per traditional-Medicare beneficiary enrolled with a NY GUIDE participant.

A blunt warning: the most common reason caregivers give up on respite is that they call NYSOFA looking for "the respite program," learn there isn't one, and never call back. Don't let yourself fall into that trap. Call NY Connects at 1-800-342-9871 and ask which of the nine streams fits your county, your loved one's diagnosis, and your insurance.

Front Doors: NY Connects, 211, and the AAA Network

NY Connects

1-800-342-9871, Monday–Friday 8:30 a.m.–5 p.m. ET; 211 routes after hours. Statutory authority: NY Elder Law § 214-d (Chapter 295 of the Laws of 2008, amended by Chapter 481 of the Laws of 2014). NYSOFA contracts with 59 NY Connects programs covering all 62 counties, NYC DFTA covers all five boroughs as a single AAA. NY Connects is federally designated as New York's Aging and Disability Resource Center (ADRC) and No Wrong Door entry point under Older Americans Act §§ 202(b) and 411.

The online directory at nyconnects.ny.gov lists about 17,000 LTSS providers. A modernization launched in beta March 2026 under MPA Proposal #63 (FY 2026 funding $4.5M).

This is the single most important caregiver phone number in New York. If you remember nothing else from this guide, remember to call NY Connects.

59 County Area Agencies on Aging

NY's 59 AAAs (covering 62 counties; NYC DFTA covers 5 boroughs) administer NFCSP, EISEP, the NYSOFA State Respite Program, Older Americans Act Titles III-B/C/D/E, Title VII ombudsman, and serve as the local NY Connects contact. Find your AAA at aging.ny.gov/local-offices or by calling NY Connects.

211 NY

Dial 211 for universal needs routing, 24/7. Per the 2014 MOU between NYSOFA and 211 NY Inc., 211 routes callers to NY Connects coordinators after-hours and when caregiving is the underlying issue.

The 17 NYSOFA Caregiver Resource Centers

The CRCs are the deepest tier of NY's caregiver-specific infrastructure. Counties: Broome, Cattaraugus, Clinton, Cortland, Fulton, Genesee, Madison, Monroe, Nassau, Onondaga, Orange, Putnam, Rockland, Steuben, Sullivan, Tompkins, Westchester. Services include 1-on-1 counseling, training, support groups, voucher administration, and (at the four pilot CRCs in Monroe, Onondaga, Westchester, and Nassau) a Geriatric Care Manager pilot under MPA Proposal #61.

NYS Kinship Navigator (KAN)

1-877-454-6463, Monday–Friday 10–4. Single statewide kinship intake covering all 62 counties; operated by Catholic Family Center under a NYSOFA + OCFS contract. nysnavigator.org. Free.

NYC Aging (DFTA)

The largest AAA in the country covers all five boroughs as a single agency. Aging Connect: 212-AGING-NYC (212-244-6469). NYC Aging operates citywide caregiver programs, dementia caregiving programs, and ADCSI grantees in addition to its NFCSP and EISEP allocations.

NYS Council on Children and Families

The cross-system coordinator for children and family services across OCFS, NYSED, NYSDOH, OPWDD, OMH, OASAS, OTDA, and DCJS. Useful when a child or family case crosses multiple state agencies. ccf.ny.gov.

Dementia-Specific Caregiver Supports

For the deep walkthrough, read New York Dementia Caregiver Guide. For the directory:

10 NYSDOH Centers of Excellence for Alzheimer's Disease (CEADs)

Ten NYSDOH-designated and -funded centers (~$2.0–2.35M per CEAD per multi-year cycle) deliver comprehensive diagnostic evaluation, biomarker workup, anti-amyloid (lecanemab/donanemab) infusion access, and family education:

Alzheimer's Disease Caregiver Support Initiative (ADCSI)

Approximately $26 million per year funds 10 grantees plus the Coalition of NY State Alzheimer's Association Chapters. NYSDOH single-source procurement. Funds caregiver counseling, training, support groups, and respite vouchers (commonly $300–$600 per year per caregiver).

NY GUIDE Model, 16 Participants

The CMS Innovation Center's Guiding an Improved Dementia Experience Model, an 8-year demonstration running 7/1/2024 through 6/30/2032, offers per-beneficiary-per-month dementia care management plus up to $2,500/year of caregiver respite for traditional-Medicare beneficiaries with confirmed dementia diagnosis. New York has 16 participants. Confirmed names include Mount Sinai (services since 7/1/2025), Northwell, Columbia Neurology, ArchCare Dementia Care Connect, Isaac Health, Tembo Health, RBA Behavioral Wellness, and CareND Neurology Group. Other NY participants per the LeadingAge NY GUIDE tracker include NYU Langone, Montefiore, Stony Brook, MJHS Health System, Catholic Health WNY, Rochester Regional Health, and an FQHC consortium, verify the full roster before relying on a specific name.

BOLD Public Health Center of Excellence at NYU Grossman

One of three CDC-designated BOLD Public Health Centers of Excellence nationally. NY State holds CDC BOLD Cooperative Agreement NU58DP006911 awarded 9/30/2023, 5-year FY2024–FY2028. The BOLD CoE supplies state and local health departments with caregiver-facing public-health programming and dementia-friendly community supports.

NIA Alzheimer's Disease Research Centers in NY

NYU Langone, Mount Sinai, Columbia/Taub, Albert Einstein, and University of Rochester are NIA-funded ADRCs. Distinct from the NYSDOH CEADs (which are clinical-care designations); ADRCs are research centers and often the site of biomarker, anti-amyloid, and combination-therapy clinical trials.

Coalition of NY State Alzheimer's Association Chapters, 7 Chapters, 62 Counties

NYC, Long Island, Hudson Valley, Central NY, Northeastern NY, Rochester & Finger Lakes, Western NY. 24/7 helpline 1-800-272-3900, free; 200+ languages via interpreter. The lowest-friction first call any NY dementia caregiver can make.

MOLST and the NY Medical Aid in Dying Act

MOLST (Medical Orders for Life-Sustaining Treatment) under PHL § 2977-a and DOH form 5003 is not an advance directive, it is a current medical order. Critical caregiver tool for late-stage dementia, terminal cancer, advanced ALS, and other end-stage conditions. Premature execution carries serious risk; never sign one without a physician walk-through.

The NY Medical Aid in Dying Act, signed February 6, 2026, is effective August 5, 2026. It does not apply to dementia patients past mild stage, the act requires decision-making capacity at the time of request. Caregivers should not assume MAID is a dementia option.

Kinship Caregiver Programs

For the deep walkthrough, KinGAP, the four legal pathways, school enrollment under Education Law § 3212, child-only TANF, fictive kin, the Bennett v. Jeffreys extraordinary-circumstances standard, read NY Kinship Caregivers: The Complete 2026 Guide. The headline programs:

• KinGAP, Soc. Serv. Law §§ 458-a–f; 18 NYCRR Part 446. Title IV-E reimbursable kinship guardianship under 42 USC §§ 671(a)(28)–(29), 673(d). Pays roughly $570–$915/mo basic plus special-needs premiums; up to $2,000 non-recurring guardianship expenses; automatic Medicaid; runs to age 21 since 2017. Fictive kin eligible since Chapter 384 of 2017 (effective 3/12/2018).
• NYS Kinship Navigator (KAN), 1-877-454-6463; nysnavigator.org. Free statewide intake operated by Catholic Family Center under NYSOFA + OCFS contract.
• NFCSP Older Relative Caregiver Track (42 USC § 3030s-1), 10% federal cap reserved for caregivers age 55+ raising related children under 18 or 18–59 disabled adults. NYSOFA implementation per 22-PI-15.
• OCFS Kinship Program, about 25 OCFS-funded local kinship caregiver programs statewide. ocfs.ny.gov/programs/kinship.
• KEEP and KEEP-SAFE evidence-based parent-training programs, Title IV-E Prevention Services Clearinghouse-rated.
• Brookdale RAPP (Relatives As Parents Program) sites, Erie, Onondaga, Westchester, Suffolk, Nassau, Monroe.
• Designation of Person in Parental Relation form (GOL §§ 5-1551–5-1557), notarized, valid 12 months, renewable; unlocks school enrollment and PHL § 2504 medical consent without a court order.
• Article 6 custody / guardianship (Family Court Act Article 6); direct kinship custody (FCA § 1055-b; no foster certification required); suitable-person placement (FCA § 1017).
• Child-only TANF (Family Assistance), Soc. Serv. Law § 350. Caregiver income is not counted; the federal 60-month time limit does not apply to child-only cases. FFY 2026 grants run roughly $389–$485/month per child.

Crisis Lines and Reporting

Every NY caregiver should save these to their phone before they need them. (You can take a screenshot of the table below if that's faster than typing.)

If you suspect elder abuse, neglect, or exploitation of an adult, including by a hired caregiver, a family member, or yourself in a moment of burnout, call NYS APS at 1-844-697-3505. APS is statutory under Soc. Serv. Law § 473 and operates 24/7. For facility residents (nursing homes, assisted living, ALPs, family-type homes for adults), the parallel investigator is the NYS LTC Ombudsman at 1-855-582-6769 under Elder Law § 218. APS and the Ombudsman complement each other, APS handles community settings; Ombudsman handles licensed facilities.

Tax Treatment of Caregiver Income

This section is not tax advice, and a caregiver with meaningful income should run their numbers with a CPA or VITA-volunteer reviewer. But three federal rules and three NY rules show up on nearly every caregiver tax return.

Federal exclusions and credits

• IRS Notice 2014-7 / IRC § 131(c), qualified Medicaid waiver payments (CDPAP, NHTD, TBI, VDC) are excluded from federal gross income for live-in caregivers. Commuting caregivers do not qualify. The most under-claimed federal benefit in NY caregiver tax practice.
• IRS Notice 2020-15 (post Feigh v. Commissioner, 9th Cir. 2020), election to include excluded difficulty-of-care payments as earned income for EITC (§ 32) purposes. For low- and moderate-income live-in caregivers, this is often the single most lucrative tax move.
• IRC § 131 KinGAP / foster care exemption, KinGAP and qualifying foster care payments are excluded from federal gross income.
• IRC § 21 Child & Dependent Care Credit, limited applicability for adult care recipients; can apply when caregiver is working and pays for care that allows them to work.
• IRC § 32 EITC, qualifying-child relationship test is by blood, marriage, or adoption; fictive kin do NOT qualify for EITC.
• IRC § 24 Child Tax Credit + Credit for Other Dependents (ODC; up to $500), ODC may apply for adult dependent care recipients.
• VA caregiver stipends (PCAFC) are excluded from federal gross income.
• IRS Publication 926 (2026), household employer cash-wages threshold is $3,000.

SSA / federal benefits treatment

• SSI, difficulty-of-care payments excluded under SSA POMS SI 00830.555.
• SSDI, excluded from SGA per SSA POMS DI 10515.015.
• SNAP, excluded.
• HUD Section 8, does not exclude difficulty-of-care payments; they count as income.

NY State conformity

NY State conforms to IRS Notice 2014-7, same difficulty-of-care exclusion. The Empire State Child Credit (TY 2025: up to $1,000 per child <4; $330 per child 4–16; TY 2026: age 4–16 amount rises to $500). The NY Child & Dependent Care Credit is based on the federal § 21 credit with NY-specific tiers by AGI.

"Do not assume", pending NY caregiver tax credit

A $6,000 refundable Caregiver Tax Credit has been part of the NY Master Plan for Aging policy menu (MPA Proposal #56) for two years. Bill numbers in the current session: A.9587 (Lupardo) / S.8911 (Cleare). Both are stalled in committee. The FY 2027 Enacted Budget left the proposal unfunded for the second year running. NYSOFA Program Instruction 26-04 (March 2026) explicitly directs AAAs and Caregiver Resource Centers not to advise consumers it is currently claimable. Earlier prior-session bills A.635 / A.3945 of the 2023–24 cycle did not advance and are superseded.

A separate but related bill, A.1421 (Paulin) / S.4111 (Stewart-Cousins), the Geriatric Care Coordination Tax Credit ($1,500), is also pending.

If you read elsewhere that NY pays a caregiver tax credit, that source is wrong as of the date this directory was published.

Cross-Cutting Programs Most Caregivers Miss

This is the consolidator's value-add. Each of the eleven programs below is genuinely useful to a NY caregiver, and none has its own deep guide on this site as of the publication date, meaning many caregivers reading guides one-at-a-time miss them entirely.

1. Medicaid Buy-In for Working People with Disabilities (MBI-WPD)

Soc. Serv. Law § 366(1)(a)(12); 18 NYCRR § 360-7.4. Lets working New Yorkers with disabilities (ages 16–64) earn substantial income (≈$67,608/year in 2025; 2026 figures pending NYSDOH GIS) and still keep Medicaid (with sliding premium). Critical for two scenarios: a caregiver who themselves has a disability and wants to keep Medicaid while working part-time, and an adult care recipient who wishes to work without losing Medicaid eligibility.

2. NY State Health Insurance Information, Counseling, and Assistance Program (HIICAP)

The State Health Insurance Assistance Program (SHIP) for New York, administered by NYSOFA with funding under Section 4360 of OBRA 1990. 1-800-701-0501. Free, unbiased Medicare counseling for beneficiaries and caregivers across all 62 counties, delivered by trained AAA-housed counselors. HIICAP helps caregivers compare Original Medicare vs. Medicare Advantage, navigate Medicare Savings Programs and Extra Help, and choose Medigap policies. Massively underused, most NY caregivers default to insurance brokers who have a financial incentive to sell Advantage plans.

3. NY EPIC (Elderly Pharmaceutical Insurance Coverage)

NY Elder Law § 244-a. Income-based prescription drug program for NY residents 65+ enrolled in Medicare Part D. Two plans, a Fee Plan for moderate-income enrollees and a Deductible Plan for higher-income enrollees, with 2026 income tier updates pending the NYSOFA EPIC page. Pays Part D copays and helps cover out-of-pocket prescription costs. Caregivers managing prescriptions for an older relative should know about EPIC, it can shave hundreds to thousands of dollars per year off medication bills.

4. OPWDD Family Support Services (FSS) and Family Reimbursement Program

OPWDD funds local Family Support Services Programs (~80+ local providers statewide) and the OPWDD Family Reimbursement program, up to roughly $3,000–$5,000 per year per family for non-Medicaid-eligible respite, recreation, equipment, and family training expenses. Distinct from the Comprehensive Waiver Self-Direction Family Reimbursed Respite ($3,000/yr) covered in the respite guide. Critical for families with developmentally disabled members who are not yet enrolled in OPWDD HCBS waiver. OPWDD Front Door 1-866-946-9733.

5. NYS Caregiving and Respite Coalition (NYSCRC)

The statewide nonprofit coalition convened by Lifespan of Greater Rochester. Runs the Lifespan Respite voucher and serves as the state-level advocacy body on caregiver and respite policy. lifespan-roch.org/nyscrc.

6. NYC Well

For NYC residents, 1-888-NYC-WELL (1-888-692-9355), 24/7, 200+ languages, free behavioral-health support for caregivers seeking help for themselves or a care recipient. Replaces what some sources still call "ThriveNYC."

7. NYS Long-Term Care Ombudsman (Program-Side)

Worth surfacing twice. Beyond the crisis-line role above, the LTCOP under Elder Law § 218 and OAA Title VII operates ~36 designated regional Ombudsman programs across the state. They are the complement to APS for facility caregivers, handling complaints in nursing homes, assisted living residences, Adult Care Facilities, Family-Type Homes for Adults, Enriched Housing Programs, and Adult Homes. Free, confidential, and effective. Most NY caregivers don't realize the LTCOP also handles non-emergency advocacy, getting a discharge appealed, getting a roommate situation resolved, getting a care plan adjusted.

8. NY OMH BH HCBS Family Support Services

Where they survive the 7/1/2024 transition. OMH operates BH HCBS Family Support and Training services for HARP and HIV-SNP enrollees via the 1115 MRT demonstration. The 1115 MRT demonstration expires 3/31/2027; renewal application filed with CMS 11/14/2025 seeking extension through 3/31/2032. NY does not operate stand-alone 1915(i).

9. MOLST as a Cross-Cutting Caregiver Tool

Most NY caregiver guides discuss MOLST under dementia. It belongs equally in any guide for caregivers of someone with terminal cancer, advanced ALS, advanced congestive heart failure, end-stage renal disease on dialysis, or advanced COPD. PHL § 2977-a; DOH-5003. Not an advance directive, a current medical order. health.ny.gov/professionals/patients/patient_rights/molst.

10. NY POA, Health Care Proxy, FHCDA, Article 81, and SCPA Article 17-A

Five New York legal documents and proceedings every caregiver should know exist, and not all of them apply to dementia.

• Power of Attorney (NY GOL §§ 5-1501–5-1514), POA reform under L. 2020, ch. 323 effective 6/13/2021 requires two disinterested witnesses (one may be the notary) and authorizes sanctions against third parties unreasonably refusing valid POAs. Critical for any caregiver managing finances.
• Health Care Proxy (PHL Article 29-C, §§ 2980–2994), § 2982 explicitly excludes dementia from the definition of "mental illness" for HCP purposes (affirmed by Matter of Mildred M.J., 43 A.D.3d 1391, 4th Dep't 2007). A person in early-stage dementia retains capacity to execute an HCP.
• Family Health Care Decisions Act (FHCDA; PHL Article 29-CC), surrogate decision-making hierarchy when no proxy exists. Friends rank below relatives by default, but a non-relative who has demonstrated significant involvement in the patient's care can be recognized as a "close friend" surrogate.
• Mental Hygiene Law Article 81 Guardianship, functional standard with least-restrictive-alternative principle. Cost typically $4,000–$15,000.
• SCPA Article 17-A Guardianship, for adults with intellectual or developmental disability. Less stringent functional review; often used for adults with I/DD as they age into adulthood.

11. NY DMV Medical Reporting Framework

Vehicle and Traffic Law § 506; 15 NYCRR Part 9. NY is NOT a mandatory-reporting state for cognitive impairment, voluntary physician reporting via DMV form DS-7. Per Hwang Y et al., JAMA Network Open 2024 (doi:10.1001/jamanetworkopen.2024.8236), mandatory-reporting states have higher dementia underdiagnosis rates because patients avoid seeking care. A caregiver concerned about a loved one's driving should request a Driver Re-Evaluation rather than report through enforcement channels.

Statute and Regulation Crosswalk

Sometimes a caregiver, lawyer, or social worker needs the underlying authority on a single page. Here it is.

Pending NY Legislation in 2026

The NY 2026 session runs to mid-June, with sine die typically in the third week. Eight caregiver-facing bills are in active play as of May 5, 2026. The MPA caregiver tax credit and the Rural Caregiver Relief Act are the two with the highest probability of action this session.

If the Caregiver Tax Credit advances mid-session, this directory will be updated within 30 days of enactment.

Federal Threats Through 2028

Several federal changes already on the books or in active rulemaking will materially affect NY caregivers between 2026 and 2028.

OBBBA, One Big Beautiful Bill Act (Pub. L. 119-21, signed July 4, 2025).

• Section 71117 phases the Medicaid MCO-tax safe harbor from 6% down to 3.5% by FFY 2032 in 0.5%/yr increments beginning 10/1/2027. NY potentially loses $1.1–$1.4 billion per year in federal match by 2032, with caregiver-facing pressure on MLTC capitation, CDPAP wages, and PCS hours.
• Section 71121 creates new 1915(c)(11) authority effective 7/1/2028 to serve people who do not yet meet NF/ICF/IID-LOC. $50M FY 2026 + $100M FY 2028 federal earmark. Could enable a NY dementia-specific waiver, but NY has not announced a filing as of 5/5/2026.
• Section 71112 imposes 80 hours/month work-or-community-engagement on Medicaid expansion adults effective 1/1/2027. Disabled adults are categorically exempt; caring for a child under 13 or an incapacitated household member is qualifying activity. Expect substantial implementation friction.
• SNAP ABAWD age threshold lowered, kinship caregivers of teens may become work-required; phases in starting FY 2027.
• Title IV-E pressure, squeezes reimbursable kinship navigator (KAN) funding; FY 2027 reauthorization is pivotal.
• Medicaid redetermination acceleration, coverage continuity risk for caregivers and care recipients.

VA PCAFC legacy participant transition deadline 9/30/2028. Extended by VA Final Rule 90 FR 47891 (9/29/2025). About 38,000 legacy participants nationally; about 3,400 in NY per VA Caregiver Support Program Q1 FY 2026 metrics. Legacy participants either transition to current criteria or lose eligibility.

Title IV-E reauthorization (FY 2027 expiry). KinGAP, FFPSA-funded kinship navigator (KAN), and other Title IV-E programs require re-authorization. Funding cliff if Congress fails to act.

SSI resource limits. $2,000 (individual) / $3,000 (couple) unchanged since 1989. SSA 2026 SSI Federal Benefit Rate is approximately $994/month individual. Any caregiver applying for SSI for an adult dependent or a disabled child needs to plan around the antiquated resource limit.

NY 1115 MRT demonstration renewal. Expires 3/31/2027; renewal application filed 11/14/2025 seeking extension through 3/31/2032. CMS approval pending. If denied or modified, BH HCBS for HARP and HIV-SNP enrollees could change. NY does not operate stand-alone 1915(i), references to "1915(i)-like" in federal briefings describe the 1115 demonstration.

Federal NFCSP appropriation cycle. OAA NFCSP funds flow through annual Labor-HHS-Education appropriations. The federal share to NY can change with each cycle. Watch the FY 2027 appropriations process.

Common Myths

NY caregivers are over-served by myth and under-served by accurate guidance. The ten below show up most often in our intake calls and CRC training requests.

1. Myth: All NY caregiver programs require Medicaid eligibility. False. EISEP, NFCSP, the 17 CRCs, the NYSCRC Lifespan voucher, the VA stack, NY PFL, NY Connects, KAN, OPWDD Family Reimbursement, EPIC, and HIICAP do not require Medicaid.
2. Myth: I can be paid through CDPAP for caring for my spouse. False. Spouses are excluded under NY Soc. Serv. Law § 365-f(2)(c), a NY state-law choice. Federal law allows it; NY does not. (Veterans have a workaround: VA programs pay spouses.)
3. Myth: NY has a $6,000 caregiver tax credit you can claim now. False. A.9587 / S.8911 (MPA Proposal #56) is not enacted; FY 2027 Enacted Budget left it unfunded for the second year; NYSOFA PI 26-04 directs AAAs and CRCs not to advise consumers it is currently claimable.
4. Myth: There is one "NY respite program." False. Respite in NY is a 9-stream patchwork. Each stream has its own door.
5. Myth: The NHTD waiver is open to new applicants. False. NHTD has been frozen at 9,400 enrollment since CMS amendment 11/23/2025; NYSDOH has suspended new referrals and chose not to maintain a formal waitlist. Look first to 1915(k) CFCO + MLTC + PCS + CDPAP.
6. Myth: Medicare hospice respite is once a year. False. 5 consecutive days inpatient under 42 CFR § 418.108(b) is reusable per benefit period subject to IDG approval. The "once a year" framing is an urban myth; FY 2026 inpatient respite per-diem rate is approximately $473/day.
7. Myth: I have to be a blood relative to get KinGAP. False. Since Chapter 384 of 2017 (effective 3/12/2018), the "prospective relative guardian" definition includes fictive kin, godparents, neighbors, family friends with a positive pre-existing relationship.
8. Myth: NY PFL pays you for caregiving labor. False. PFL is wage replacement for time off work. CDPAP, VA PCAFC, VA VDC, VA Aid & Attendance, and the IRS Notice 2014-7 exclusion are the cash-to-caregiver vehicles.
9. Myth: A kinship caregiver needs legal custody to apply for benefits. False. The child-only TANF grant under Soc. Serv. Law § 350 does not require legal custody; the caregiver's income is not counted; the federal 60-month time limit does not apply to child-only cases. NY Education Law § 3212 authorizes school enrollment without a court order. PHL § 2504 authorizes medical consent without a court order.
10. Myth: Difficulty-of-care payments count against EITC. False. The IRS Notice 2020-15 election (post-Feigh v. Commissioner) lets caregivers include excluded difficulty-of-care payments as earned income for EITC purposes. Often the most lucrative tax move for low- and moderate-income live-in caregivers.

Resources

Statewide front doors

State agencies

NYC-specific resources

Statewide nonprofits and advocacy

VA NY VAMCs

Frequently Asked Questions

What to Read Next

• Caregiver in New York, landing page, the front-door overview that points to every NY caregiver guide on this site
• How to Get Paid as a Family Caregiver in New York, full deep dive on the nine paid-caregiver pathways
• Respite Care in New York, the 9-stream respite decision tree
• New York Dementia Caregiver Guide, CEADs, ADCSI, GUIDE, anti-amyloids, MOLST, legal-document playbook
• NY Kinship Caregivers: The Complete 2026 Guide, KinGAP, KAN, fictive kin, child-only TANF, the four legal pathways
• NY CDPAP Deep Dive, the program that pays family caregivers most often in NY, with 2026 wages, PPL transition, and litigation status
• NY Managed Long-Term Care (MLTC), how the plan structure shapes everything above
• Caregiver Burnout, Signs and Support, for the moment you need help yourself

Find personalized help navigating New York caregiver programs at brevy.com.

Last verified May 5, 2026. Brevy's editorial team will re-verify NY Paid Family Leave figures, NHTD enrollment status, GUIDE Model participant roster, and pending NY caregiver tax credit status at least quarterly. If you spot an error, please email corrections@brevy.com with the specific fact and source.