Governor Phil Murphy • Lt. Governor Tahesha Way

Disability Information Hub

Caregivers of individuals with disabilities serve an important role as part of the care team, providing support with daily activities and in many cases serving as a coordinator of other support services, like healthcare. Caregivers themselves need supports to prevent them from burning out. This article provides details about programs that help educate caregivers, give them breaks from providing care, and connect them with other caregivers to provide mutual support. 

 

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For resources specific to caregivers of children, see “Special Child Services and Special Education” or “Child Care Resources.” 

Special Child Services and Special Education

 

Resources are available to help parents and caregivers understand and navigate the special education system:

Parental Rights in Special Education Guide:

This document describes the state and federal laws affecting the provision of special education to help parents understand their rights in the special education process. The document is available in English, Spanish, Arabic, Chinese and Portuguese.

Child Study Teams:

A Child Study Team is a multidisciplinary group that provides parents and teachers with a variety of learning-related services, including consultative, evaluative, and prescriptive services for students who are experiencing academic difficulties. Typically, a psychologist, a learning disabilities consultant, social worker and oftentimes, a speech/language therapist will meet with parents before any testing is conducted and will continue to meet periodically if a student requires special services.

If evaluation is completed, the Child Study Team and parents will create an Individualized Education Program (IEP), with stated goals and objectives. An IEP is a written document that defines the student’s goals and specific accommodations, supports, and services the school will provide for a student with disabilities to help them succeed in school.

For students with hearing loss or who are deaf or blind, the New Jersey Specialized Child Study Team provides resources. For more information, see our article on Commission for the Blind and Visually Impaired resources.

Special Education Ombudsman:

The Office of the Special Education Ombudsman (at bottom of page) offers valuable resources and information to support parents, students, and educators regarding special education rights and services.

Child Care Resources

 

Statewide Respite Care Program

This program offers services to individuals needing care so as to provide a break (“respite”) to unpaid caregivers. Services can include adult day care, home care, companion services, campership, or a short stay in a facility. There is a caregiver directed option, which allows the caregiver to pay for and be reimbursed for services or items that make caregiving easier. Cost share determined on a sliding scale from 0% to 25% of the cost of care apply.

Individuals eligible for this program must:

  1. live in the community and require daily, basic care that is currently being provided by unpaid caregivers, such as a spouse, family members, or friends
  2. not participate in other services that provide this type of care
  3. meet financial guidelines for income and There may be a co-pay based on income.

For more information, visit:
https://www.nj.gov/humanservices/doas/services/q-z/srcp/

 

Alzheimer’s Adult Day Services Program (AADSP)

This program gives a break (respite) to unpaid caregivers who are caring for a person with Alzheimer’s disease or a related disorder, such as dementia, by subsidizing adult day care at participating day centers. The day centers provide higher staffing ratios and dementia-specific care. There are co-pays based on income.

Individuals eligible for this program must:

  1. have a qualifying diagnosis that includes permanent and progressive dementia
  2. live in the community and require daily, basic care that is currently being provided by unpaid caregivers such as a spouse, family members, or friends
  3. not participate in other services that provide this type of care
  4. meet financial guidelines for income and There may be a co-pay based on income.

For more information, please visit:
https://www.nj.gov/humanservices/doas/services/a-k/aads/

 

Personal Care Services

 

Personal care services are services that support people who are unable to perform activities of daily living on their own. Personal Care Services can be obtained through several programs.

 

Personal Care Assistant Service (PCA)

PCA services are non-emergent, on-going health related tasks performed by qualified staff in an eligible NJ FamilyCare (Medicaid) member’s home. The purpose of the program is to provide assistance with activities of daily living and household duties essential to the individual’s health and comfort. To apply, contact your NJ FamilyCare Managed Care Organization (MCO).

 

Personal Preference Program (PPP)

The PPP offers an alternate way for individuals to receive their NJ FamilyCare Personal Care Assistant (PCA) services. This program enables eligible NJ FamilyCare recipients to direct and manage their PCA services rather than receiving traditional PCA agency services. NJ FamilyCare recipients work with a financial management service to help develop a plan through which they can decide the services they need, as well as the individuals and/or agencies they wish to hire to provide the identified services. To enroll, contact your NJ FamilyCare Managed Care Organization (MCO) and ask to speak with a Care Manager.

 

Personal Assistance Services Program (PASP)

The PASP is a personal care assistance program for individuals with permanent physical disabilities who are capable of directing their own services. The program provides up to 40 hours per week of routine, non-medical personal care assistance to adults ages 18 and above who are employed, preparing for employment (attending school or other training), or engaged in volunteer work. Personal assistants help with personal care tasks including, but not limited to, bathing, dressing, eating, grooming, meal preparation, shopping, light housekeeping, driving, or using public transportation. To apply, contact your county PASP Coordinator. For more information and County Coordinator contact information, visit: www.nj.gov/humanservices/dds/programs/personalassistance/

  

Jersey Assistance for Community Caregiving (JACC)

Jersey Assistance for Community Caregiving (JACC) is a program that provides in-home services to seniors aged 60 and over who require a nursing facility level of care but wish to remain in their homes. Qualified individuals may have the opportunity to hire their own eligible family, friends, or neighbors to provide the care they need.

Services available through JACC include the following: care management, personal care assistance, caregiver relief (respite), home modifications, special medical equipment and supplies, chore services, personal emergency response system, home-delivered meal services, social adult day care, and transportation. JACC has a monthly co-pay based on the participant’s (and spouse’s) income. For more information, visit: https://www.nj.gov/humanservices/doas/services/a-k/jacc/

 

Managed Long Term Services and Supports (MLTSS)

The Managed Long Term Services and Supports program (MLTSS) is a New Jersey initiative intended to provide a better way to help seniors and individuals with disabilities live at home for as long as possible. MLTSS also provides access to private duty nursing services for children requiring a skilled level of care. For more information about MLTSS, visit: www.nj.gov/humanservices/dmahs/home/mltss.html

 

Programs of All Inclusive Care for the Elderly (PACE)

PACE provides frail individuals, age 55 and older, comprehensive medical and social services coordinated and provided by a team of professionals in a community-based center and in their homes, helping program participants delay or avoid long-term nursing home care. To participate in PACE, an individual must be 55 years of age or older, require nursing home level of care but be able to live safely in the community at time of enrollment with the services of PACE, and reside in the service area of a PACE organization. You can leave a PACE program at any time.  For more information, visit https://www.nj.gov/humanservices/doas/services/l-p/pace/.

Community Resources

 

Care2Caregivers Program

Care2Caregivers provides free and confidential telephone counseling, education, support, referrals, and resources for New Jersey individuals and the caregivers who support them. Trained peer counselors who have also been family caregivers can help with every step on the caregiving journey.

 

The Caregiver Action Network (CAN)

The Caregiver Action Network serves a broad spectrum of family caregivers ranging from the parents of children with special needs to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS to adult children caring for parents with Alzheimer’s disease. CAN provides education, peer support, and resources to family caregivers across the country free of charge.

 

Family Caregiver Alliance (FCA)

Family Caregiver Alliance addresses the needs of families and friends providing long-term care through offering programs at national, state, and local levels to support and sustain caregivers.

American Healthcare Association (AHCA)

AHCA advocates for quality care and services for individuals who are frail, elderly, and/or have disabilities

 

Well Spouse Association

The Well Spouse Association advocates for and addresses the needs of individuals caring for those with chronic illnesses or disabilities by offering peer-to-peer support and educating healthcare professionals and the general public about the special challenges and unique issues “well” spouses face every day.

 

National Alliance for Caregiving

The National Alliance for Caregiving is a nonprofit coalition of national organizations focusing on issues of family caregiving. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, a government agency, and corporations.

 

Safe Care Cam Program

The Safe Care Cam program makes micro-surveillance cameras available for free 30-day loans to anyone who suspects their loved one is being abused or neglected by home health aides or other in-home caregivers. For more information, call the Division of Consumer Affairs toll free 1- 800-242-5846 or (973) 504-6375.

Mothers of Children With Special Needs

The Mom2Mom helpline (1-877-914-6662) offers mental health and peer support to mothers of special needs children. The hotline is staffed 24 hours a day, seven days a week by moms who have been trained in peer counseling and crisis support and have special needs children themselves.

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