Running head: THE FAMILY RESOURCE NETWORK 1

Agency Report

Veronica L. Trathen

Wilmington University

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Running head: THE FAMILY RESOURCE NETWORK 2

MISSION

The Family Resource Network (FRN) is a non-profit statewide organization that supports

children and adults with intelligential and developmental disabilities that live in the State of New

Jersey. Currently FRN has 4 offices throughout the state that include: Parsippany, Hamilton,

Barrington and Brick. With about 80 full-time staff and 150 part-time staff they provide an array

of services to meet the growing needs of individuals and their families. Services include but are

not limited to: In and out of home Respite, Community Based Supports, Camp, After School

Programs as well as Employment services. The Family Resource Networks mission is

dedicated to offering individuals and their families with continuing needs the greatest

opportunities, resources and services to support a full and happy life.

HISTORY / DEMOGRAPHICS

Rooted in the 47-year history of The Family Resource Network was the founding

organization, The Epilepsy Foundation of New Jersey (EFNJ). EFNJ in its origination supported

those living with epilepsy only. It started with a small group of parents sitting around a kitchen

table brainstorming on how to identify services for their loved ones. As EFNJ grew so did its

demographic of families. EFNJ went from serving not only people with epilepsy but

developmental disabilities and other chronic illnesses. This change made it clear that a

reorganized was needed to improve on marketing and to sharpen its expertise in key areas to

better support all the families. With this, in 2004, The Family Resource Network was

introduced. EFNJs purpose did not change but FRN now serving as the overall arching

organization expanding its expertise to serve more families with various disabilities through a

single point of entry. Making FRN a family-friendly, customer-focused contact for people

with disabilities and their families. The Family Resource Network today is a comprehensive
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human service organization encompoising of not only people with epilepsy but children and

adults with all intelliecutual and developmental disabilities including Autism and their caregivers

needs.

RELATIONSHIPS WITH OTHER ORGANIZATIONS

FRNs guiding principles include having individuals participate to the fullest extent

possible in his or her own care. Family and community are recognized as vital resources for the

individual. FRN stresses the importance of Volunteer leadership and how participation

contributes to the success of the organization. Involvement of participants and their family

members are integral to their success and that of the organization. FRN has many community

partners and in order to avoid duplication of efforts for families they work hard to maintain and

grow those relationships. FRN has a full menu of Services and programs to address the complete

spectrum of customers with special needs. FRN partners on programs, office space and staffing.

These partnerships are for the betterment of services for families but are also to cost save. It is

also important when these partners have financial ties to keep communication open.

Communication is imperative for everyone involved especially in non-profit human services

where the rules change almost daily.

STRUCTURE

The Family Resource Network, the largest provider of family support services to

individuals with Developmental Disabilities in New Jersey, is comprised of four affiliates:

Family Support Center of New Jersey, Autism Family Services of New Jersey, Caregivers of

New Jersey, including its founding affiliate The Epilepsy Foundation of New Jersey. Each

affiliate has its hand in a specialty service for its perspective audience but each are connected to

the Network and serve as resources to each other. Across all affiliates The Family Resource
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Network touches nearly 39,000 people in some service related way annually. If one is going to

understand The Family Resource Network, it is imperative they understand each of its affiliate

organizations.

The Family Support Center of New Jersey (FSCNJ) is the clearinghouse on information

and referral for individuals and families with developmental disabilities and chronic or serious

illness in New Jersey. The Center offers a "One-Stop-Shopping" approach to individuals seeking

information on disabilities and chronic health conditions and services by providing them with

easy access to a comprehensive array of services. FSCNJ primarily provides information and

referral to families looking for family support type programs which are services aimed at caring

for a child with a disability, medical condition, rare disorder or other special needs. FSCNJ

responds to the needs of families who are experiencing emotional distress and feelings of

isolation, lack of information surrounding their childs development and the services available to

them. The Center operates a statewide toll free number for family members, professionals and

other interested individuals to call for access to a broad array of support services. In the last year,

the Family Support Center has received 5000 new telephone intakes of persons asking questions

about disabilities and presented to over 8,000 individuals on a wide-range of disability topics.

The Family Support Center has had over 10,000 unique visitors and over 35,000 hits in the last

year. Support components include the NJ Parent to Parent program; a library and database of

both state and national services and resources; informational workshops for families; training for

families and professionals, cash subsidies and guardianship stipends, coordination of the

National Caregivers Conference, the development of a private provider database and the

reproduction and distribution of the OPTIONS manual. In addition, the on-line database provides

families with information about agencies and resources in their areas. Over 10,000 resources are
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currently listed on the site. Families can enter their zip code, disability specific information and

type of service needed. In seconds, the family will have an accurate, up to-date list of available

resources. This is the only place where information on all services available in the state is listed.

Families are empowered to learn about available resources and select options that best fit their

needs.

Autism Family Services (AFSNJ), another affiliate of The Family Resource Network,

came to life with the raising statistic of people with Autism. Here in New Jersey 1 in 43 people

have autism. Autism also tends to accompany other developmental disabilities as a dual

diagnosis. The needs of families affected by autism are immense. AFSNJ work with these

families, with agencies, government entities, and individuals with autism to develop an array of

support services and opportunities. To improve on the ability of individual to productively

interact with the world around them AFSNJ has developed a vast service network for people

with autism and their families. Part of that is due to New Jerseys history in providing special

education services, a model that was the foundation of the Individuals with Disabilities

Education Act. In great measure, the citizens of New Jersey have been effective advocates in

creating and maintaining early intervention, pre-school, public and private schools that have

become world class models of success. This continues to be provided by parents and concerned

New Jersey citizens through dozens of organizations and agencies. Schools, adult services,

residential programs- these are the building blocks of AFSNJ service delivery system. Autism

Family Services of New Jersey is the cement between those blocks, offering additional services

and supports needed to sustain families in their efforts to provide an enriched life for their sons

and daughters with autism. All the services offered through Autism services are geared to the

Autism population that require specialized staff and include a variety of behavioral supports.
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Caregivers of NJ focuses on caregiving needs across the spectrum. Caregiving is the act

of assisting someone you care about, who is chronically ill or disabled and unable to care for

him/herself. Caring for a family member with a disability can be both a rewarding and an

overwhelming experience. Sometimes the demands of the caregiving role can cause the person

giving care to lose focus of his or her own needs and identity, and feelings of depression or burn-

out may set in. Caregiving duties effective all the populations that The Family Resource

Network Services and focuses on advocacy issues related to legislation and training. Caregivers

of New Jersey works to shed light on the growing needs of caregivers and the increased need for

support.

Epilepsy Foundation of NJ, the founding organization, still exists in its original

orientation. Services are specific to individuals who have Epilepsy. Services include medication

assistance programs, scholarships for graduating seniors with epilepsy, nurse and police

educational programs and camp. EFNJ does have an advocacy arm as well and assists

individuals around driving laws, medication changes and doctor recommendations. This affiliate

seems to do very well in independent fundraisers spearheaded by inspired families. It is single

handedly the one affiliate that has the most private funds raised by families and donated to the

organization.

GOVERNANCE

The Family Resource Network and all its affiliates work together to accomplish the

overall agency mission and each perspective affiliates missions. Organizationally FRN operates

in Teams comprised of 5 quadrants. The Executive Director, the Chief Financial Officer and

Director of Resources Development overlap with each Team and each Team overlaps with them.

Within each quadrant are Directors of specific services who work individually and collectively to
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make sure that all services are uniform, duplicated when necessary, meet all quality standards

and is available to all interested families. It is key that these Directors understand that they are

the connective tissue necessary for making sure all affiliates are working together in a

comprehensive way. The Executive Director oversees all aspects of FRN, FCS, EFNJ, CNJ and

AFSNJ. However, there are three Lead Staff he relies heavily on that include the Director of

Finance, Director of Operations and Director of Programs and Services. The Director of

Operations takes the lead on working with the Finance Team and The Director of Programs and

Services lead a Team of Coordinators who do a lot of supervision and oversite of the part-time

staff working the actual programs. A strong leadership is key but it is just as important to have

the right staff working the programs and being the ambassadors of the organization since they

are often the faces the individuals and families see.

POLICIES & PROCEDURES

Policies and procedures that are the foundation of an organization. Looking at them

regularly, making sure they still apply or making changes as the agency grows should be a

regular occurrence for any reputable organization. FRN has a policy and procedure committee

that includes several levels of staff from various departments. I participate in this committee and

focus specifically on the programs and services policies since this the department I supervise.

Often this group is broken up into sub groups to review specific policies and come back to

finalize with the larger group since each department has their own set of policies and procedures.

FRN received its Commission on Accreditation of Rehabilitation Facilities (CARF) accreditation

last year in which having established policies and procedures were necessary. Separately, FRN

has a Director of Quality Assurance who takes a much closer look to be sure things are

happening as they should within these policies and making recommendations for improvement.
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FUNDING / STRENGTHS, TRENDS & CHALLENGES

FRN up until about 2 years ago was primarily funded by The Division of Developmental

Disabilities (DDD) under the Department of Human Services under state contracts. Two years

ago, children and adults services for people with disabilities made a major change and children

were moved to being supported under The Department of Protection and Permanency (DCP&P).

Even though today, the Department of Protection and Permanency still have contracts with FRN

the Division of Developmental Disabilities for adults went Fee for Service Medicaid Model. All

these changes prompted FRN to begin to think differently about how they did business. Today,

FRN still received funds from DCP&P and DDD but they now accept private pay and have

worked hard to develop granted funded programs. This change was a huge challenge for an

organization that relied on state contracts for roughly 90% of its funding up until this shift. The

change to Medicaid was also a challenge. Larger organizations were already working under this

model so this was a complete change in the way they did business that required a lot of time,

training and money to develop. Even though FRN is the largest provider of in home supports in

the state of New Jersey there were also disadvantages to not be a residential provider that also

had a financial impact. For example, training requirements by the state remained requirements

but for an agency like FRN who did not provide residential placements training costs were

included in the cost of doing business where residential providers were separate. FRN currently

is in a challenging position on this. They need to find a way to cover training costs that are

required and are not covered in the reimbursement rates from Medicaid. It became clear that

FRN needed to determine its areas of strength and could no longer provide services that were

risky financially. They began to partner with agencies like theirs that did not duplicate services
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or directly compete. What makes FRN a great organization is recognizing what they do well

and helping families to find the resources that are not in their area of expertise.

INTERN ROLE

My role in my Capstone project is something that will assist all the affiliates within the

Network as I develop a Volunteer Center. Today, there is no single entry for volunteers to enter

the organization. There is not standard application, process or manual in which to follow. The

current staff have no means to communicate their wants and no way to track or match them with

existing volunteers or to seek new ones. FRN does several annuals events, they display and

participate in forums throughout the state and they provide many direct services to which

Volunteers could have a meaningful experience while helping the organization. Volunteers

would be very helpful to the over organization and so establishing a volunteer center will hopeful

make a great impact on the great work they doing.

I have worked for this organization for 20 years. I have enjoyed getting up each morning

and looking forward to the good and the bad of it. I was 20 years old when I started and most of

my professional experience developed here. I have been a sponge in order to learn as much as

possible to be the best resource, advocate and business person I can be. I enjoy helping people

help themselves. I am proud of developing new services where there are none. Proud to be a

part of developing the Volunteer Center as part of my capstone because it is something I know is

needed and I will get to see this project all the way through. FRN has supported me, taught me

and continues to be a place I am proud to be affiliated with. I hope I have many more years at

FRN.