Supporting Youth and Young Adult Caregivers

Every characteristic used to describe a hero can be applied to adult kinship caregivers, but for them to acknowledge these attributes can be nearly impossible. After asking why they decided to take on the extra responsibility, the response is either an inquisitive stare or “I’m all they had.” The role, as noble as necessary, is not viewed the same when roles are reversed. Youth caregivers often go unnoticed

Because they are my grandchildren and I have unconditional love for them, no one else in the family stepped up and I didn’t want to see them in foster care. I didn’t receive any financial assistance, I took them for love but wondered privately how I was going to care for them. I became homeless for three years before finding stable housing, no one wanted to rent to a senior citizen raising grandchildren.                                                               Gail Fedele, 67, Bronx

Younger caregivers offer emotional support and learn to navigate the red tape of social services at young ages without acknowledgement or reward. In some cases, the tasks are treated as a debt paid for saving the care-receiving youth from unwilling or unable biological parents, especially when lines are blurred and the youth caretaker is now a young adult. Caregiving roles aren’t stagnant, depending on present need, both parties should work to support and nurture the partnership. The feeling of being needed should be balanced with appreciation and a real sense of support.

I missed out on growing up as a little girl. As early as the age of 9, I was changing diapers, feeding my sister, making bottles, and doing hair. I didn't have the chance to play with my siblings as siblings; I always felt like the second mom. I remember one time when my mom had my little brother in the stroller and she wanted me to take him with me and my friends, so I'm around 13 or 14 years old with a baby stroller hanging with my friends. This experience made me grow up fast. I felt like I was grown. So now I see why sometimes I play around or act goofy or make jokes because I really didn't have a childhood. I would even go food shopping for the was a bit much, but I don't blame my mom and/or have any hurt feelings towards her.                                                            Stacey 45, Brooklyn

While older adult caregivers receive assistance in managing the generational parenting gap, the youth feel the results of their guardian’s learning curve in a rapidly changing world. Curfews, romantic relationships, technology, and gender identity are just a few common themes dividing traditional families; in kinship homes, the youth and older adult can feel as if they are on feuding planets.

Everything I did my great grandmother questioned or considered weird because I wasn’t into sports and outside. I wanted to stay home and play games on my computer. My brothers and I needed more pocket money, even while I was in college, I would get $5 a day which would lead to us getting money in questionable street ways. It wasn’t a budgeting issue, she didn’t consider the value of the dollar changed, she thought $5 was more than enough.     Derrick, 26, Bronx

I felt stupid because I wasn’t able to help them with their homework or be on top of their social media profiles due to the generation gap. For health reasons I couldn’t ride bikes with them, go on roller coasters… but I emphasized hard work and academic excellence and I am very proud of who they are today.   Gail Fedele, 67

The reasons are systematic, often socially inherited and directly stem from poverty, untreated mental health issues, and lack of focused federal legislation. Local government and social service/advocacy agencies have worked to create and change policies and identify these youth caregivers, but cultural norms, recent mistrust of government, and misguided remedies seem to be barely making a dent in easing the trauma associated with youth caregiving responsibilities.

Some examples are;

- college bound teens limiting their school choices due to caregiving responsibilities.

- pre-teens refusing to accept a caregiver role at the expense of their childhood.

- resentment of care receiver for limiting their childhood experiences.

- poor school attendance due to long term medical conditions of the guardian care receiver.

 Once we moved into the Grandparent Family Apartments I started taking things more seriously. The youth programs had resume building workshops, networking tips, job placements...I started to think ahead and see the value of education. Before I moved here I was heading for a life of crime.                                                   Derrick, 26, Bronx 

 Instead of only approaching the kinship family structure as a deficit, let’s create safe spaces to build on what the families are doing right and then we can challenge harmful habits.

- Open door policy. Not all clients feel comfortable in groups or are able to commit to an appointment

- Family advocate -  make stakeholders aware of challenges faced by the caregiver.

- Recreational respite focused on joy not as a distraction but to instigate a lifestyle shift.

- Evidence based parental practices on self-care, positive family interactions, and delegating responsibilities associated with caregiving.

- Vet all referrals for scheduling flexibility and cultural sensitivity.

- Peer led support groups that inspire, empower, and hold participants responsible for best practices and celebrating successes.

- Kinship housing facilities to prevent homelessness.

 Present and former youth caregivers are ready to speak their truths to inform social service influencers of the private barriers families face. As a community, we must make sure their stories are included when kinship caregiver support is discussed and future policies are implemented.

  Damond Haynes is the Youth and Young Adult Services Program Manager for PSS and an Anti-Bias Practitioner.

 PSS, founded in 1962, is an innovative, multi-service agency working for New York City’ older adults, caregivers and their families. PSS creates community and builds the capacity to thrive by delivering vital tools, programs, and resources.

For more information please visit our Website:  or Facebook:

Respite and Medicaid Long Term Care

Medicaid Managed Long Term Care (MMLTC) programs provide community based care services for people with long lasting health problems or disabilities. These services are paid for by Medicaid.

In many cases - access to these services assist the care receiver AND the caregiver.  Often allowing scheduled time off or the ability to go to work everyday and still keep a loved one in the community.

Many people believe that they do not qualify for Medicaid because their monthly income is above the Medicaid allowable limit of $825.

The answer: 


The purpose of a pooled trust is to shelter excess income (also referred to as a "spend down") so it is not counted by Medicaid, thereby making a person eligible for Medicaid and the Managed Long Term Care Programs.

Medicaid is a health insurance program for the poor. In order to qualify, one must have income and assets below a certain limit. For a single elderly or disabled person in NY in 2017, these limits are $825 /mo. of income and $14,550 in total assets. The income limits for people disabled, age 65+ or blind). Due to the high cost of living and medical services , many people find that they are barely scraping by and considered "too rich" to qualify for Medicaid.

Fortunately, by using a pooled trust to shelter excess income - Medicaid eligibility is possible.

 The monthly spend down or excess income is deposited into the trust, the trust can then pay monthly bills, such as rent, mortgage, taxes, cable, phone, utilities etc.  The disbursements from the trust must ALWAYS be for the sole benefit of the trust participant.

A pooled trust is a trust established and administered by A Non - profit organization. A separate account is established for each beneficiary, but for the purposes of investment and management, the trust pools the money of each participant.

Caregivers can benefit greatly by helping their loved ones qualify for Medicaid using a trust. By getting help into the home - caregiver burden can be  dramatically reduced.   

Medicaid Managed Long term care services include: 

Health Services - nursing, home health aides
Personal Care - Help with bathing, dressing and household chores.
Adult Day Health Care
Social Day Care
Nursing Home Care
Specialty Health - Audiology, Dental, Optometry and physical therapy.
Home Delivered Meals
Personal Emergency
  Response systems and Transportation to medical appointments

For more information contact:

New York Medicaid Choice
1-888-401-6582\TTY 1888-329-1541

Click Here For a complete list of Pooled Supplemental Needs Trusts in New York

Kinship Care

Kinship care is the raising of children by grandparents, other extended family members, and adults with whom they have a close family-like relationship such as godparents and close family friends because biological parents are unable to do so for whatever reason. Legal custody of a child may or may not be involved, and the child may be related by blood, marriage, or adoption. This arrangement is also known as "kincare" or "relative care."

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