Giuliana Ferretti’s decision to establish Plan Wise Living, met two unmet needs: a flexible role that would allow Giuliana to care for her disabled daughter, and a community to provide her daughter, and others like her, with opportunities, support and inclusion. Plan Wise Living celebrates uniqueness and ensures individuals with disabilities can truly live their best life

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

Plan Wise Living understands disabilities and realises abilities. Having over 25 years of professional industry experience and over 20 years personal lived experience, we know how to listen to and support people with disabilities.    

We support participants through their unique life journeys, working with them, their families, allied and medical health teams to provide the best holistic care. 

We are passionate about creating inclusive communities, developing awareness of high complex care and genetic disorders, especially with our young adult program. 

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

My daughter, Gabriella was diagnosed at 16 months with a rare genetic disorder. Employment for me during Gabriella’s school years was always a challenge. There were many medical and specialist appointments to schedule and attend, night runs to the children’s hospital, which often led to days in a ward for me with Gabriella, many sleepless nights, and then simply being emotionally and physically exhausted.

Gabriella transitioned out of school at 18 and it was obvious there were no suitable post-school programmes that would keep her safe, engaged, stimulated, and would embrace her individuality and uniqueness. In addition, I needed employment that could support us through this next journey in life. No such service or employment existed which is why Plan Wise Living was created.

2.

How does your business benefit the rare disease community?

Plan Wise Living recognises people diagnosed with rare disorders, in particular genetic disorders and complex care needs. Our programme is tailored for people aged 17 to 35 with similar interests and complex care needs. The program embraces our participants uniqueness and advocates for communities to understand our accessibility needs and how to be more accessible and inclusive. We provide training to our staff to ensure our participants high care needs are met. We have small numbers of participant groups and equivalent staff ratios, ensuring no-one is ever unattended and everyone has the best opportunity at participation and development.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

Unfortunately, I wasn’t given any advice as such. I sought support from people who I felt were able to assist me in establishing my business with things such as policies and procedures, accounts and staffing. My main support has been my husband. He has helped to emotionally and financially support me during the establishment stages of the company. He helps out around the house and with Gabriella’s care. In addition, some of my current staff have been a big support, working with me to support our participants and adopt my vision. And in particular, my administration manager who has been loyal, encouraging and very supportive.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

Establishing, promoting, and operating my own company has been far more difficult and challenging than I ever imagined. It takes a lot of ongoing hours. Every day is about Plan Wise Living now. Even on my ‘days off’, I still work.

Trying to make sure that my husband knows he’s important and that we still have some time together along with family time with our daughter and grandkids is important, but difficult.

I am fortunate that I can be mostly flexible with my work hours, which allows me to still be able to care for Gabriella. Nights are the hardest with Gabi, waking several times every night. So making sure we’ve got great carers to help through the day, gives me my down time I need to be able to work.

I do my best to make sure I keep in touch with everyone, understanding what might be happening for them at work and outside of work. Trying to make sure that my staff have work/life balance and that they feel valued and respected.

Using a good planning system such as my digital calendar that I can access anywhere, anytime is important. Sharing this with other people and enabling them to contribute to it is also important to keep on top of everything.

I try and be very communicative and transparent, letting staff know if I am going to be unavailable for a little while because of family time, my daughter’s health or any other reason.

5.

What advice do you have for someone starting their own business?

Surround yourself with people who you respect and who respect you, who believe in you, who are genuinely happy for you and with you, and embrace your vision.

The hardest part (I’m still developing this): don’t ever settle for less. Stand firm on your beliefs, on your vision and mission and if someone does not fit with that, do not be afraid to make tough decisions. You may lose in the short term, but the long-term gains will be worth it.

6.

What are the most rewarding aspects of establishing and running your own business?

Being able to help others. To be able to offer someone a job, that’s special, especially other mums and mums of special needs kids and understand their struggles.

To be able to help people realise their potential, to support them through personal and professional development and watch them grow, that’s a good feeling.

Personal sense of achievement and accomplishment, to do something I never ever thought I would be able to do is really rewarding.

7.

What would you consider to be the greatest achievements of your business thus far?

Everyone says that if a business survives its first five years, then it’s solid. So, I guess given we’ve just turned five, that’s a pretty big achievement.

But bigger than that, is the change and difference I have made to some people’s lives. I have a participant who came to my service, sleeping on an old wooden bed, on bricks. He needed a new bed, a hoist, a powerchair, additional care services, and more. Being able to advocate for him, to get him all those things, that’s been incredible.

But my overall biggest achievement has been our Young Adult Enrichment Program. To finally create a program that I wanted so much for my daughter and people like her. To have a safe space, a place where her and other young adults are cared for, are understood, are encouraged, supported and where they have fun every day. They are accepted and live life to the fullest in our communities. They are developing friendships, they are learning to communicate together in their own special ways. They recognise each other. My beautiful “rare” daughter has found her place. Achieving this is heart-warming and beautiful.

8.

What advice would you give someone considering working in the rare disease space?

Prepare yourself with high level knowledge and understanding of your clients and the processes needed to ensure business and client safety, security, and sustainability. Surround yourself with likeminded people. Know where to go for help and don’t be afraid to ask. Network as much as you can.

Listen to your clients and their families–they are the experts. Embrace their skills and knowledge and be compassionate when days aren’t good sometimes. Don’t judge, understand their life is not like anyone else’s. Be compassionate to their daily struggles and find a way to work with them.

9.

What are your hopes for the future of your business?

To expand our amazing young adult program, to build an educational, fun, inclusive, wheelchair accessible space for all our participants and their families. To expand on community engagement opportunities for our participants and the community.

To create life experiences with lifelong memories and friendships for our participants.

To work with government to ensure legislation is more inclusive and understanding of people with disabilities.

10.

If you hadn’t founded Plan Wise Living, what was Plan B?  What did your 10-year-old self want to be?

(Laughing) my 10 year-old-self wanted to be a teacher. Had Plan Wise Living not started, I would have been a special education teacher. I was studying  for a bachelor of education and psychology when I started Plan Wise Living, after being a school learning support officer for 12 years. I stopped studying just because it became too much while trying to establish Plan Wise Living.