Resource Connections, Inc

This month’s non-profit in the spotlight is an organization whose focus is helping families find resources and individuals gain independence. Resource Connections, Inc (RCI) is based in Lanham, Maryland; and currently only serves residents of Prince George’s County, Maryland.

Who They Are 

Resource Connections Incorporated (RCI) provides coordination of community services (families like mine are probably more familiar with resource coordination, same thing). The services they provide are funded primarily by State & Federal funds; and paid by the Maryland Developmental Disabilities Administration (DDA) – families are not expected to pay out of pocket.

The approach they take has almost become buzz-words, but having met the staff and leadership I’m comfortable asserting they truly embrace these terms and incorporate them into their daily operations. The person-centered, community-based and cost-effective approaches are highlighted when staff members focus on what those they serve need; they don’t just check the boxes – they think outside the box to find creative solutions.

What They Do 

RCI provide services, after referral from the DDA, in four areas – Eligibility Assistance, Waiting List Coordination, Resource Coordination and Waiver Enrollment. I’d also like to point out if they cannot directly help a family or individual, they will do their best to provide referrals to appropriate resources.

RCI cannot make the determination regarding service eligibility and need, this is done solely by the DDA. However, RCI can help families by processing applications to DDA – completing interviews with families and requesting copies of required documents. Once the individual/family has been placed on the waiting list – RCI provides a Waiting list coordinator to locate and connect with community resources. Again, the level of service provided is determined by the category of service need established by the DDA.

Resource Coordination comes in to play when families are receiving DDA funded services. Coordinators help them by; identifying desired outcomes, connecting them to the appropriate providers/community resources, work with the support team to develop a realistic and effective plan, monitoring the plan’s implementation and the individual’s/family’s satisfaction with the provided services. Coordinators take time to get to know the individuals/families, to ensure the plans created are meaningful and centered on their (the individuals’) goals and achievement objectives.

Medicaid Waivers are programs provided by Maryland allowing people to maximize funding for services provided in the community – including Waiver services for those deemed DD eligible and authorized for services by the DDA. It can be daunting to determine which, if any, waivers someone may be eligible for – so RCI provides Waiver Specialists to help identify and apply for benefits like Medical Assistance and Social Security.

What Else Should I Know

When a family becomes eligible it may be challenging to determine which organization to select – RCI is one of (6) provider agencies in Prince George’s County; so why should someone select RCI. What appeals to me, as a parent, is RCI’s commitment to becoming an expert in one County, and developing deep relationships with providers. This allows RCI, in my opinion, to really be clear on a provider’s philosophy and culture – which is important to me as a parent because I want to know more than what I can read on their website.

To me, the only way to really understand is taking the time to get to know the providers; time will lead to dropped guards and transparency – not that I think organizations maliciously hide things; but I do believe it’s human nature to put our best foot forward and hide the dirty laundry (which we all have, and it doesn’t make us bad). It’s important (again, this is my opinion) to understand the good, the bad and the ugly – because when someone is receiving services they won’t just be exposed to the good.

Disclaimer

I am not an employee of Recource Connections Incorporated (although at the time of writing I am a Board member – 11/26/17)  and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

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Celebrate The Wins

All too often I think we, as a population, tend to focus on what’s not working and the negatives in our lives. And who can blame us, seemingly being bombarded non-stop from news outlets, Twitter & other social media and all the other external stimuli we’re exposed to.

This can make it difficult to remember life isn’t all bad; in fact, in my opinion the good far outweighs everything else – if we just take the time to look for it. Contrary to what some may believe, positive occurrences don’t need to come in momentous packages. Children often show us this through the wonder they exhibit as they explore their world – what happens to this as we age? Where does it go?

There is no doubt life can be uncomfortable and, at times, downright miserable. But why should we allow that to become our reality? Even when things are going horribly wrong, I believe you can find something good to focus on to help start lifting you up – even if it’s only someone allowing you to pull in front of them on the freeway or having your child (or spouse) do something you ask them w/o an argument.

Focusing on these little “victories” will train your brain to look for others; shifting your focus from noticing just the bad to really understanding how much good you are exposed to on a daily basis. To me, this is doubly important as a parent of a child with Special Needs. I have found it scarily easy to lose sight of life’s simple pleasures – falling into a pit of darkness where nothing seems to go right at times.

This isn’t healthy, and it’s certainly not enjoyable. Yes, there are times when my son loses ground – times when he’s unable to utilize skills I thought he’d mastered. And yes, crap like flat tires on days when I need to be somewhere or the universe seeming to pick dump on Eric days happen to me. But dwelling on this only serves to make me feel like crap for longer, and causes me to look at everything through the wrong lens – focusing on the negatives of every situation.

I’m no Pollyanna, I understand the world is not all rainbows and unicorns. I’ve had my dreams shattered and felt like the universe laughed in my face. I’m choosing not to make this my focal point. I have found life to be much more enjoyable if/when I celebrate my successes, no matter how small they may seem.

Like any habit, it may be difficult at first – especially if it’s not something you’ve been doing. You may need to actively look for things to celebrate, but I promise if you stick with this it becomes much easier. In a few months you won’t even have to think about it – it will have become the norm. It’s simple, but it’s not easy. I had to tune out much of the external stimuli to give myself enough bandwidth to start doing this. I still tend to walk away from those who focus only on the negative, I don’t begrudge them their beliefs but I don’t want it in my life.

The year’s almost over – wouldn’t it be fantastic to live 2018 and beyond looking at the world through a lens where you can readily acknowledge and celebrate ALL your wins? Give it a try, and remember you get out what you put in – so if you are halfhearted in your attempt don’t expect amazing results.

The Parents’ Place of Maryland

I’ve been researching resources since 2012, and I didn’t really know what the Parents’ Place of Maryland was until I met their new Executive Director, Rene Averitt-Sanzone, in 2017. I’d heard of them, but I didn’t think they were a resource I could use because I didn’t think they had a presence in Montgomery County (even though it has the State in its name).

Since meeting Rene I’ve taken time to research and learn more about The Parents’ Place, and I’m excited to share – I would like this to reach every family in Maryland who is looking for resources.

Who They Are 

The Parents’ Place of Maryland, like so many other organizations focused on helping those with disabilities and their families, was founded in 1990 as a grass-roots organization by families, professionals and community leaders. Their Mission (from the website) is “to empower families as advocates and partners in improving education and health outcomes for their children with disabilities and special health care needs”; and from everything I’ve seen they walk the talk.

What They Do 

The Parents’ Place of Maryland offers help in (3) distinct ways: one-on-on support, information & resources, and training programs. If you’re not sure they can help, reach out – if they aren’t the right resource, they can probably direct you to whoever is. Their information & resources page links to a library covering a host of topics, from bullying to transition (and SO much more!); a Services Directory and a Podcast offering “RealTalk for Parents”. The training programs are available to parents/families and professionals, but I wasn’t able to find a calendar highlighting what’s available so you’re best option (as far as I can tell) is to call and see what’s coming.

What Else Should I Know

Since they were founded, they have helped over 10,000 families and professionals – providing information, training and support. They’ve held over 70 workshops, and offered 10 conferences; and have sent over 300,000 informational and educational materials – with a staff of less than 15 and over half of their employees are “Parent Educators”.

Disclaimer

I am not an employee of The Parents’ Place of Maryland, and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.

One Step Forward, Two Back

This week was rough – I’ve grown so used to my son preparing his own meals I seem to have forgotten he has challenges, brought on by his disabilities. What brought it home, in frightening clarity, was his failure at cooking a meal he’s been cooking for over a year – and more troubling – my reaction to it. I lost my temper, as if he was deliberately trying to screw up. I thought I had put this behind me, having been a demon I let guide me while Active Duty and only confronting after my wife’s illness and subsequent death.

I think most people can relate to this feeling, not necessarily because they have a child or family member with disabilities; but because I believe we all have things we are trying to improve or grow, and when we get angry at ourselves for “allowing” ourselves to slip. I don’t think we should just shrug and say “oh well”, but there has got to be a more constructive emotion than anger. Understand where the anger comes from, what is the root cause; and harness the energy to improve yourself.

For me, the root cause is my need for independence – not having anyone else dependent upon me, for anything. As much as I would like to believe otherwise, and will work towards; given how things are now my son will never live completely independently. I’m not willing to shift his care to an organization, although I will hire staff to assist after he leaves High School.

The difference, to me, is controlling who works with him. He’s incredibly capable, I’m both blown away and proud of how much he CAN do – and I feel like there is more just waiting to be expressed. My opinion (and it’s just that, I have no proof or facts) of organizations are they will do the best they can, but at the end of the day they are serving the masses and one individual could be lost. I don’t want that individual to be my son.

All of these thoughts and feelings create the stress that expresses itself in a loss of temper when my son seemingly loses ground. Seemingly, because I think it’s an unfair characterization. There are things I have done in the past I more than likely cannot do error-free anymore; yet I don’t want people losing their temper with me. All of us, in my opinion, have times when we lose ground. Maybe we’re trying to get healthy, out of debt or just want to be a better person; and we slip. Maybe we have a cigarette, splurge on something we don’t “need” or lose temper with our son.

The trick is not giving up. Accept we’re human, and mistakes will happen. Identify what caused the mistake – was it a decision/reaction or was it something really out of our control. In my experience there are few things truly out of our control, because we react – and we can condition ourselves and our reactions; through careful monitoring and honest self-assessment. I’m not suggesting we beat ourselves up (figuratively or literally); but I am a firm believer in truth – having made more than my share of mistakes when I was younger. It takes practice, and practice takes time. Celebrate your wins, focus on how you earned them – so when there is a slip/backslide you will know which behavior(s) can get you back on track.

Take the Long View

I’ve found it can be incredibly difficult to plan for the long term, with all the noise and distractions vying for your attention in the short term. Something always seems to come up, tempting you by its immediacy. It’s because of this I think it’s critical we have a deep understanding about the what, when and why of our long term goals.

A common example I’ve been helping people with is where they want to live when their child is older. Understandably they don’t want to move while the child is in school, because of the possible disruption it could create. However, if they are considering a move to another State they could be hurting themselves by waiting; because most, if not all, States have transitioning youth funds set aside for young adults leaving High School at 21. Waiver programs are designed to give students automatic head of the line privileges; but this will not apply to someone who moves into the State after High School – they will have to wait.

The “noise” is people with good intentions encouraging the parents to stay, reinforcing the parents’ belief it’s what’s best for the child. And it very well may be, but it should be weighed against the need for continuing services after High School. There is also fear of the unknown – how will my child react, what will the school be like, etc. It’s a lot to handle, especially if you have other children and/or are a single parent – you don’t have to do it alone; there are organizations and professionals who can help.

I’m using one example, focusing on a family who has a child with Special Needs making a move; but taking the long view is just as relevant when considering whether to buy or rent (a house), when to take social security, when to retire, etc. Take some time to yourself, away from distractions, and think about what you want and where you see yourself in 20 – 30 years. Then back into it, how are you going to get there?

Write it down – it’s not meant to be set in stone, but having a written record will help you when those crises occur and you need to make an immediate decision. In the heat of the moment it’s unreasonable to expect yourself to be able to think about the future; but you should absolutely be able to look at what you had written and use it to help ground you. You may not change your mind about what needs to be done, but you’re no longer operating purely on emotion. Practice with routine decisions, so you build the habit and muscle memory kicks in when the poop hits the fan. I’m here if you need/want help.

Living Independently

As I continue to work on enrolling my son in Social Security, and completing the necessary paperwork with the VA and DFAS (military pay system), I can’t help but wonder what he’s going to do when I’m gone – and will this all be enough. Obviously we can’t plan for every eventuality, so we do our best to address as much as possible.

When we’ve finished applying for his benefits, my next focus will be on where he will live. There are many organizations throughout the country offering Residential facilities, and with Group Homes no longer authorized it’s a safe bet these homes will not have more than (4) residents; but we’ve (my son and I) decided not to pursue this route – because he doesn’t want to have a roommate.

There are also organizations creating communities of individuals with a specific diagnosis, I believe the most common is Autism. Although I think this is an incredible opportunity for some families, for me personally it does not meet the full inclusion experience I want for my son.

So what does this leave? For us, we’re looking at purchasing a multi-family home (duplex). While I’m alive, and able, I will work with a property management company to rent out the other unit (I don’t like doing maintenance). When I’m gone, either I will have paid off the mortgage or the life insurance will settle the debt; either way ownership of the property will transfer to my son’s Special Needs Trust, and the Trustee will work with the property management company.

In my opinion, the advantage to this is the property will pay for itself after I’m gone. The Trustee will have the authority to increase rent, evict tenants, etc; and the property management company will ensure the property is well maintained. Living in the house prior to me passing will allow us to develop an understanding of what the household expenses are; which will allow me to flesh out a reasonable budget for the Trustee to follow.

If you have a child, or sibling, you’re caring for and you haven’t put any thought into where they will live after you’re gone please use this as a siren call to start planning. There is no one-size fits all solution, it really boils down to what the individual wants/is capable of and your financial situation. The longer you wait, the more difficult it will become – but it’s only too late if you pass away before you do something; because then it falls into the hands of the State. If you’re not sure what to do, reach out and ask.

Hydrocephalus Association

Odds are if you haven’t been affected by Hydrocephalus, you’ve never heard of the Hydrocephalus Association; but for those whose lives it affects, it can have significant impact. It’s my hope this blog will pique your curiosity, and get the conversation started. Everything I’m referencing comes from the website  http://www.hydroassoc.org/; unless otherwise cited.

The Hydrocephalus Association offers a host of information about hydrocephalus on their website, so I’m not going to dive too deep. But at a surface level, I think it’s important to understand there are many ways one can develop hydrocephalus – according to stats I’ve read there are over One MILLION people in the US alone living with hydrocephalus.

Who They Are 

The Hydrocephalus Association serves as the primary nexus for research on hydrocephalus, a condition defined by an abnormal, excessive accumulation of cerebrospinal fluid (CSF) within the cavities of the brain (from website). They are committed to finding a cure to hydrocephalus, and to that end fund research programs and host conferences and workshops.

My introduction to hydrocephalus came at a seminar I presented about financial planning for families with Special Needs. In an almost off-hand fashion a mom informed me her daughter “only” had 13 brain surgeries before her 6th birthday. I may be mistaken on the exact numbers, but it shook me because it was a double digit number.

What They Do 

The Hydrocephalus Association uses a 3-pronged approach to accomplish their mission of eliminating hydrocephalus – they connect families with each other, forming communities offering support and resources; they work on clearing misconceptions and deepening the understanding of what hydrocephalus is, and isn’t; and funding research in biomarkers and genetics (to name a few directions of the research funding).

What Else Should I Know

According to NIH’s National Institute of Neurological Disorders and Stroke, hydrocephalus is a condition caused by excessive accumulation of cerebrospinal fluid (CSF) in the brain; and it may be congenital (present at birth) or acquired (develops at time of birth, or later). It may also be “communicating” – CSF blocked after it exits ventricles; or “non-communicating” – CSF blocked along one or more of the narrow passages connecting the narrow passages connecting the ventricles. The only treatment I was able to uncover is the installation of a shunt, basically a drain inserted into the skull to remove the excess fluid.

For more information, I’ve included a link to NIH’s fact sheet. Personally, I was surprised to learn it’s 30x’s more common than Cystic Fibrosis, because I’m much more familiar with Cystic Fibrosis.

Disclaimer

I am not an employee of the Hydrocephalus Association, and any errors noted are my own. If I have misrepresented, or misstated anything please provide constructive feedback so I may make the appropriate change(s). All opinions and views are my own.