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ALS Support in Greater New York

If you live in New York City, Long Island, the Lower or Mid-Hudson Valley, or Northern or Central New Jersey, ALS United Greater New York is a regional first call for ALS-specific navigation.1

Call 212-619-1400, email [email protected], or visit als-ny.org. Tell them the person's state, county or borough, and ZIP code so they can confirm the service area and route the request.

Choose the route that matches the problem

Need What to ask for Starting point
New diagnosis or no ALS coordinator “Can a Care Service Coordinator help us map the next steps?” ALS United general contact
ALS-specialist clinical care “Which multidisciplinary clinics currently serve our area, and how do referrals work?” Live clinic page and the person's clinician
Mobility, transfer, bathing, communication, or home-access equipment “Who can assess the task, document the need, and check a loan while coverage is pending?” ALS clinic plus equipment/assistive-technology program
Caregiver exhaustion or no trained backup “What caregiver group, respite, training, or assistance path can we check?” Care Services or caregiver-support route
Transportation to an ALS clinic “Is transportation available for this clinic, location, and appointment?” Care Services; availability is limited
Home accessibility “Can someone assess the home and help us understand options?” Care Services home-assessment route
Emergency or outage planning “How should we document equipment, batteries, communication, and backup contacts?” Preparedness resources, local emergency management, utility, and ALS team

ALS United describes its community care services as free and includes care coordination, support groups, caregiver support, home assessments, equipment and assistive technology, clinic collaboration, limited grants, transportation, and education.2 Every service still requires current confirmation of catchment, fit, inventory, funding, eligibility, and timing.

Equipment and communication technology

The regional equipment program offers short- and extended-term loans of recommended durable medical equipment and assistive technology at no charge. It may bridge an insurance delay or help with an item that insurance does not cover.3

Start with the task—not a product name—and involve the relevant ALS clinician, PT, OT, SLP, respiratory clinician, or assistive-technology professional. Ask:

  • Does a healthcare professional need to recommend or document this item?
  • Is an appropriate item currently available?
  • Who checks fit and provides caregiver training?
  • What is the insurer or durable-medical-equipment supplier doing in parallel?
  • What is the backup if the device fails or the need changes?

A loan is not a guarantee of inventory, clinical fit, delivery date, insurance approval, or a permanent replacement.

Clinics and transportation

ALS United works with multidisciplinary ALS clinics in the region and maintains a live clinic-routing page. The clinic model brings together ALS-focused medical, rehabilitation, respiratory, nutrition, communication, and psychosocial support.6 Use the live page rather than a copied directory because locations, teams, relationships, and appointment rules can change.

Limited clinic transportation may be available. Confirm the location, appointment, accessibility need, notice required, cost if any, and current availability before relying on it.

Caregiver support and respite

Ask Care Services about caregiver groups, respite planning, training, peer connection, and any current limited assistance. ALS care can involve complex communication, transfer, or equipment routines, so specify what a replacement caregiver must be trained and permitted to do.4

If respite is urgent, say what is making the current plan fail: no sleep, caregiver injury, work conflict, no one trained for essential care, or inability to leave the person alone safely.

Add the state long-term-care route

ALS-specific help and state long-term-services-and-supports navigation solve different parts of the problem. Use both when home care, Medicaid, respite, personal care, transportation, food, housing, or benefit applications are involved.

New York

NY Connects: 800-342-9871. This free statewide No Wrong Door service provides objective information and assistance for people of all ages and disability types, caregivers, and families. It routes by county to long-term services and supports and benefit-application help.9

New Jersey

Aging and Disability Resource Connection: 877-222-3737 for aging/disability navigation and respite questions. New Jersey Disability Information Hub: 888-285-3036 for live disability-service navigation.10

These services identify routes to check; they do not decide eligibility or guarantee an opening.

Social Security disability and Medicare

For an eligible ALS claim, federal policy waives both the five-month Social Security Disability Insurance waiting period and the 24-month Medicare waiting period. The person still has to apply and receive an individual determination.7

Medicare says a person with ALS receives Medicare automatically in the same month Social Security disability benefits begin. If disability benefits have not been requested, applying through Social Security is the first step.8 Ask SSA or Medicare to confirm the person's effective date, coverage choices, premiums, and interaction with other insurance.

Do not treat this as a promise of approval, payment amount, or a specific start date.

Emergency boundary

ALS United offers emergency-preparedness information but is not a disaster-response service. Its guidance includes notifying local responders of disability and equipment needs, charging and testing backup batteries, contacting the utility about essential medical equipment, and checking shelter accessibility.5

Immediate danger

If the person cannot breathe, is choking, is unresponsive, or is in immediate danger, call 911.

This page does not imply a partnership, referral agreement, or endorsement by ALS United Greater New York. Confirm the pilot's preferred referral workflow directly before using any partner-only language.

  1. ALS United Greater New York. Official homepage and service territory. Source → ↩

  2. ALS United Greater New York. “Our Care Services.” Source → ↩

  3. ALS United Greater New York. “Equipment Loan Program.” Source → ↩

  4. ALS United Greater New York. “Support for Caregivers.” Source → ↩

  5. ALS United Greater New York. “Emergency Preparedness.” Source → ↩

  6. ALS United Greater New York. “ALS Clinics and Centers.” Source → ↩

  7. Social Security Administration. “ALS Disability and Medicare Waiting Periods Waived.” Source → ↩

  8. Medicare.gov. “Other Paths to Medicare: ALS.” Source → ↩

  9. New York State Office for the Aging. “NY Connects.” Source → ↩

  10. State of New Jersey Disability Information Hub. “Resources for Families and Caregivers.” Source → ↩