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  • Julie Payne-Neward

Club Sandwich Generation, Deluxe!

Picture taken in 2013.

Yummy, the Club Sandwich Generation! So what exactly is this new term? All I did was inch more towards 40 years old with each passing day and suddenly this term is like saying "Google" for an Internet Search and "Lyft" for a taxi.

Allow me to define the "Club Sandwich Generation", then we can get into the "Deluxe" part.

For many of my peers, as best defined by the Dictionary, we are "a generation of people, typically in their thirties or forties, responsible for bringing up their own children and for the care of their aging parents." We are all around caregivers; here is a fantastic TEDTalk on the topic.

Yes, we are smack dab in the middle of an savory turkey sandwich and we are the turkey.

I am married, raising two daughters; one is nearly 5 years old and the other is 7 months. In addition to this, I have my very experienced mother. (We say experienced, not aging)

I grew-up in Walnut Creek, a very nice suburb of San Francisco. The house I grew up in is one-level with 5 bedrooms and 2.5 baths with a pool and spa in a beautiful neighborhood backing-up to the open space. It was remodeled in the 90's and rocks the pastels of tan, salmon pink and seafoam green. In comparison to today's standards, it needs a complete remodel.

Today, I live in Concord with my family, another nice suburb. Our 1950's house is 1100 sf, two-stories with a one-car garage and the only access to the outside is through the garage. Our house is just big enough. We bought it a few years ago, because our prior Landlord was selling the house we were renting downtown Walnut Creek. We were very lucky everything fell into place.

We have great family life. During the week my husband takes the train to work before I wake up. Then I manage to get two kids out of the house; one goes to preschool and the other goes to childcare with a family member. Then I head into work managing a shopping mall with an amazing team in a fantastic community. In the afternoon either my husband or a family member picks all the kids up. Our weekends are coveted. We dedicate this time to family bonding; playing at the park, running to Costco or Trader Joe's, taking much needed naps and enjoying movies. I love my husband and kids so much, but I also love working and being productive out of the home as we need to afford a California mortgage.

Our life sounds like many other families out there.

But it won't be like this for long.

Like our peers, we will want to manage the care for our aging parents. Where does his mom live? Where does his dad live? Where does my mom live? Where does Natalie live?

Wait. Pause. Read back. Did you catch- that?

Yes, where does my sister Natalie live?

This is the "Deluxe" portion.

Unlike many of my peers, I have an additional layer to think about. Sibs', those who have a sister or brother with an intellectual or developmental disabilities (I/DD) also have to think about their sibling. Us Sibs are very important because we are oftentimes the future caregiver and from what I have learned it happens in a crisis. The National Sibling Leadership Network, of which I am a Board Member of, has a White Paper on Sibs. Here are some facts to consider:

"In the United States, 71% of the 4.9 million people with I/DD live with their families, yet only 7% of funding goes to family support services."

Braddock, D., Hemp, R., Rizzolo, M.C., Tanis, E.S., Haffer, L., Wu, J. (2015). The State of the States in Intellectual and Developmental Disabilities: Emerging from the Great Recession . Washington, DC: American Association on Intellectual and Developmental Disabilities.

"Even though siblings have unique roles and are likely future caregivers , the needs and perspectives of siblings are often overlooked. By addressing the needs of siblings, their brothers and sisters with disabilities will have better outcomes."

Support Needs of Siblings of People with Developmental Disabilities, Intellectual and Developmental Disabilities , 50(5), 373 - 382.

Heller, T., Kaiser, A., Meyer, D., Fish, T., Kramer, J., & Dufresne, D. (2008). The Sibling Leadership Network: Recommendations for research, advocacy, and supports relating to siblings of people with developmental disabilities. Rehabilitation Research and Traini ng Center on Aging with Developmental Disabilities: Lifespan Health and Function, University of Illinois at Chicago.

There is a specific need for information on future planning. Future planning is critical because it helps start an important dialogue among families and helps break up the planning process into manageable steps. Future planning programs should include both the siblings with and without disabilities in the entire process.

Arnold, C.K., Heller, T., and Kramer, J. (2012). Support Needs of Siblings of People with Developmental Disabilities, Intellectual and Developmental Disabilities , 50(5), 373 - 382.

Heller, T., & Kramer, J. (2009 ). Involvement of adult siblings of p ersons with developmental disabilities in future planning. Intellectual and Developmental Disabilities, 47, 208 - 219.

Future Planning is the keyword.

Why does that matter? This quote sums it up best about a Sib/sibling relationship, “I am not informed of all her doctors and medications. If something were to happen to my mother, these services may be interrupted.”

From the 2006 Disability Research Brief with the University Center for Excellence in Developmental Disability for the Start of Illinois.

We need to plan for peace of mind. I do not want to scramble in a crisis. When you scramble, mistakes are made, money is wasted and people's energy gets zapped. If you care about your family, you plan.

I worry about my mom. She has been through so much. She took care of Natalie 100% for nearly 5 years straight with hardly any state funded assistance after we learned of Natalie's sexual assault, which was featured on NPR. She does not work out of the home because she cares for my sister. She needs a break. She needs peace of mind. I need peace of mind.

I have so many questions constantly rolling through my mind, in this "Club Sandwich Generation, Deluxe"!

1) Who will take care of my mom as she gets more experience? (Again, we do not say aging.)

2) Who will take care of Natalie? Will it be Me? My sister Patricia? My brother Philip?

3) Where will my mom and sister live? With me? In their own home together? Separately? With Philip? With Patricia?

4) What health needs will they have? Will there be a lot of doctor appointments? Who will take them to appointments?

5) How will we pay for Housing? Medicine? Recreation?

7) Will I be able to take a vacation and leave them with people I trust? How do I find people I trust? How do I pay for that person? How much do they charge? What does state funded respite offer?

8) As we are all getting more experience in life, will I have to quit my job to take care of both of them as a care manager or caregiver? Will I have protection if I have to leave my job for a short period of time and be a caregiver? What is Paid Family Leave?

9) How do I take care of myself and my family?

10) How will Natalie feel about all these changes? How do we lessen the impact of change on her? How do we all make sure she has an excellent quality of life as time goes on?

Please understand that I do not view this as a burden, but I view it as a challenge and opportunity to innovate.

I need my family to understand that I want to plan now, BEFORE we are in a crisis. Natalie's life does not need to be managed in crisis mode and nor do ours.

So what could a plan look like?

Many newer developments have houses with more space. The fact that many developers are now including floor plans that have an in-law suite or an option for a home, within a home, better know as a "NextGen" is amazing. As Generation Club Sandwich, we are all starting to live Under One Roof or in the same Community.

Lennar has been very innovative; "Everybody has their own privacy and their own space, so for instance, my mom has her own suite," said Jennifer. "It is essentially a full one-bedroom apartment on the main floor, so I don't have to worry about her falling down the stairs. She has her own front door, she can have her own decor there, she can stay up however long she wants and not interrupt the family either and also, we have enough space as a family to have a regular family unit, and then she can have her separate living." Quoted from an article on CNBC titled, "Under one roof: Multigenerational housing big for builders"

My mother could get a brand new house with an in-law set-up, hire a reliable caregiver, and live for half the price of what she has now, very comfortably with privacy.

The Bay Area is getting very expensive and if we wait too long to create a plan and execute it, I fear that we will be priced out, leaving very few options.

As a Sib, I need to think about my future, my family's future and my mom and sister's future.

I want a plan. Not to be selfish, but to make sure those around me are taken care of and that we will not be scrambling in a crisis. Ask any caseworker with the Regional Center what happens as a parent gains experience; the Sibs are left to scramble and the quality of life for all involved changes, most often for the worst. As a society, we do not want that.

What can you do as a typical person?

Support caregiving legislation and make sure adults with I/DD are included and that "Sibs" language is also included. Remember, we are oftentimes overlooked.

Trump just signed the RAISE Family Caregivers Act. RAISE stands for Recognize, Assist, Include, Support and Engage. The AARP was behind the non-partisan bill.

If you are a parent or Sib, start thinking about the future and drafting a plan. Regarding housing, look into single- family homes that service all generations under one roof. The government does not want the burden of care for housing and caretaking, they are transferring that responsibility to families and families are coming up with their own plan using In-Home Supportive Services or IHSS. State run institutions are closing, which is good.

In recent discussions, I have heard of some very unique housing opportunities such as The Kelsey, which is "Inclusive". Another type of development is "Intentional." The state has a list here too of various housing options to consider.

I will add that Regional Centers should be core to guiding and documenting an all encompassing plan. It would not be fair for a caseworker to work with a family in crisis, without a plan. Let's set ourselves up for Success!

From my heart, all I know is that given Natalie's victimization, she will remain with family. We made that promise and I intend that we keep it. Now is is up to my mom, brother, sister, husband and I to discuss how we can avoid crisis mode. Welcome to Club Sandwich, Deluxe!