Family members and caregivers of loved ones who have significant disabilities — development disabilities, mental health challenges, physical disabilities — shoulder significant daily responsibilities. No matter how busy caretakers are in the present, aging parents caring for their child must also plan for their child’s future after they are gone. Where will their child live? Who will be ensuring that a loved one receives good healthcare? And who will make sure that caregivers know the family’s wishes and hopes for their child, as well as the child’s preferences and needs?
These are a few of many critical questions families and caregivers of people with disabilities need to ask themselves, according to Planned Lifetime Assistance Network of New Jersey (PLAN/NJ), a statewide nonprofit organization that helps families and individuals with disabilities answer the question: Who will care for my loved one when I am gone?
“People with disabilities are people, and they deserve a good quality of life. That includes meaningful work, meaningful activity, and social connection,” says Ellen Ball Nalven, the executive director of PLAN/NJ. “Everybody needs this, everyone deserves a good life.”
The National Alliance on Mental Illness New Jersey (NAMI NJ), a nonprofit advocacy group that provides support for families and individuals dealing with serious mental illness, has invited PLAN/NJ and Nalven to host a workshop on “Life Planning: Helping Families Plan for the Future of a Loved One with a Disability” Thursday, September 4, from 7 to 9 p.m. at the NAMI NJ Office, 1562 Route 130 in North Brunswick. The free program is being offered through NAMI NJ’s multicultural outreach program: South Asian Mental Health Awareness in Jersey (SAMHAJ). For information, E-mail firstname.lastname@example.org or call 732-940-0991.
Nalven grew up in Englewood, where her father is a stockbroker and her mother worked in the publishing industry. She attended Rutgers, Class of 1978, majoring in special education and also receiving her masters of education. She is a certified special education teacher, with a post-master’s certificate in psychiatric rehabilitation. She worked in employment services for people with disabilities and she has also taught at Marie Katzenbach School For the Deaf and the New Brunswick Adult Learning Center. Nalven has been executive director at PLAN/NJ since 2005.
“We are teaching people how to do life planning, and that involves legal estate and independent living planning, guardianship and other legal means of protection,” says Nalven.
At the meeting Nalven and PLAN/NJ will distribute a complimentary life planning workbook, designed to give families a framework on how to do life planning. The workbook includes important sample documents that familiarizes families with legal planning and special needs trust paperwork, better preparing them to seek resources. The workbook also contains a journal of wishes, intents, and questions intended to ensure that specific needs, preferences, and personal hopes are addressed for each individual.
After the presentation, attendees can get clarification on how certain tools and resources will benefit their children. In her experience, this is when Nalven usually sees lively conversation and many questions.
“Very often once people learn more about these specific topics, they become more comfortable and it encourages them to prepare documents that will provide caretakers with what they need to take over the care and oversight of family members,” says Nalven.
PLAN/NJ advises families to create a detailed future plan, called a LifePlan, that provides a full history, documentation of the family’s concerns and wishes for the loved one, and a blueprint for future caregivers. LifePlan consists of three key steps:
1. Identify what current caregivers presently do that are central to the child’s well-being. The questions offered at the beginning of this piece are a good start to having an honest evaluation.
2. Know what state funded services or government benefits will meet the child’s essential needs. Understanding availability and eligibility has become a growing concern for families in light of reductions to government services to people with disabilities, and changes to eligibility rules.
“There is a great deal of confusion, anxiety, and concern as to what services will be available,” says Nalven. “For example, residential placements, such as group homes, are less and less available.”
3. Decide what one’s unmet needs are, and determine how external social services can help with certain caregiver roles. PLAN/NJ offers guardianship services, home visit monitoring, and other services essential to a Life Plan. In particular, special needs trust administration is an important component of future life planning that will be a special focus of Nalven’s presentation.
“By asking these questions, we are encouraging families to start to seek out resources to answer these questions,” says Nalven.
NAMI NJ, the organization hosting PLAN/NJ’s presentation, has a longstanding relationship with PLAN/NJ, frequently inviting the latter organization and its experience in developing supports to educate families and people with disabilities. NAMI NJ associate director Aruna Rao says she wants to educate families on the resources and options available to them for planning an individual’s future.
Rao started working at NAMI 15 years ago and has a family member with a mental illness. She is also an immigrant from India, and she noticed how families in immigrant communities with family members dealing with mental illness rarely accessed NAMI NJ’s services.
“Being an immigrant I know that it is not because we do not suffer from the same issues but because we don’t want to reach out for help,” says Rao. In response Rao started SAMHAJ, which means understanding in Hindi, in 2001. NAMI NJ’s multicultural outreach programs also include programs for African-American, Chinese, and Latino communities and other groups that NAMI NJ found did not access their services.
Culturally specific programs and support groups provide a familiar and comfortable setting for immigrants to reach out and also find resources. Rao describes groups of family members, caregivers, and people with illness first meeting together and having a common, and safe, opening to discuss why they are there. NAMI NJ runs support groups in every county.
“They discover that they are not alone,” says Rao. In particular Rao voices concern for family caregivers who often are overwhelmed and have little spare time outside their responsibilities. However, it is in the family’s best interest to overcome their fears and begin planning as soon as possible.
“Families really need to address their fear and anxiety while planning their future. We want them to come out and seek information and learn how to help themselves,” says Rao.