Government "Charity", Part I, The Problem.

On June 28th my youngest son Fulton turned 2, a day we were uncertain we would see a year ago. As mentioned in an earlier post, Fulton has Spinal Muscular Atrophy. When we received this diagnosis just we were under the impression he presented as a Type 1. Most children with Type 1 SMA die before their second birthday. (Since those early days, we've come to realize Fulton does not have this most severe form of SMA and we anticipate more memorable birthdays with him and all our children.)
With the arrival of his toddler years, we are anxiously awaiting his power wheelchair. Our 15 passenger van is equipped with a wheelchair lift and we recently christened (at a Nativity of St. John the Baptist Party) our new deck with handicap ramp. Though somewhat bittersweet, we have rejoiced at these developments; brought about not through government programs, but through the overwhelmingly charitable acts of our friends and family.
Being the parent of a special needs child has opened my eyes painfully wide to the problems inherent in government run social programs. I have always argued here on TNW that charity is best carried out by Christians and neighbors not faceless agencies and government bureaucracies. It is now with personal experience behind me that I more fervently defend my earlier assessment. (The only exception I will make is for the NJ Early Intervention program. So far, it has been a lifeline for me, especially in regards to my social worker. But I will touch on them more in Part II. )
Our experience with other county and state agencies has been nothing but red tape, misdirected calls combined with a continuous waiting game. For example, my son will be receiving a powerwheel chair.This is standard for SMA children his age. Our cozy farmhouse needed major modifications just to get Fulton and his chair through the door. Thankfully, we already had a bedroom and full bath on the first floor. And because of his age, his chair should be small enough to fit through even our old, narrow interior doorways. But we needed at the very least a ramp and new back entrance door. The first agency I was referred to was just reorganized due to budget cuts. I was bumped from one office to another, given mis-information by the second office, re-called the first office after getting help from my social worker and told my request for ramp was submitted and someone would be contacting me. I was informed that once contacted I would get an evaluation of my house and the evaluator would then determine our families needs in regards to renovations and what their office would contribute. Then I could get three estimates and, with the departments approval, have the work done. That was four months ago and I have yet to hear back from them.
Our county ran a program similar to the state one, but, when employed, my husband made too much to qualify. Once he was laid off we inquired again and learned it was at least a four month wait to initiate the process. And then once the ball was rolling, the county would select our builder and take a lien again our house, so while we would save money now, the total cost would be deducted from the sale of our house.
These are the programs that are in place to help families. Seriously.
I won't even launch into all the issues we're dealing with applying for medical aid. That's a whole separate post.
Thankfully, we had friends and family throw themselves into getting our house ready ASAP. This was crucial because Fulton's chair is arriving in just a few weeks-ahead of schedule even! If we had relied on a government program, Fulton's chair would be sitting unused, for possibility months.
So what about those who don't have the support of friends, family or the community? What of those who can only turn to the government for aid? They're going to have to sit and wait. Either trapped in their homes, unable to get out, or stuck in a hospital or rehab facility. I've been investigating the ramp issue since last winter because I knew Fulton's chair would be ordered this spring or summer. What about those who are effected in a sudden accident? A car accident victim no longer able to walk-his family is expected to plan for home modifications and fill out reams of paperwork while making life or death decisions in the ER? Because otherwise, how will anything be done by the time he's able to come home?
I understand the need for government programs to provide a safety net so no one slips through the cracks but relying on the government for immediate needs seems downright impossible and even dangerous. When first told of all the programs available to help us, I was so relieved, but as I quickly saw the restrictions, limitations, etc, honestly, I panicked. There were programs to help, but that would take to long as mentioned above. Programs that would pay, but we'd have to pay the money up front.-which we've done to modify our van with a wheelchair lift; maxing our card out in the process as we wait for the reimbursement check. And there are programs to help with medical expenses but they require a regular scouring of our financial records and if we make too much one month, sorry, no help or, better yet, whoops, we overpaid, your family owes the government some money back.
Families who come to rely on these programs quickly learn that getting ahead equals less assistance even if getting ahead only means a promotion to night manager at McDonalds. That promotion may bring you more income but not enough to meet the demands of raising a family member with a disability. So one is forced to stay destitute, and live off the system, or become independently wealthy in order to cover all the needs of their family member. Those of us trying to stay middle class and not fall into poverty are totally screwed, to put it mildly. Our family's financial planning in regards to saving for our children's future and our retirement is actually detrimental to obtaining certain types of aid. We will have to exhaust all these savings, ie wipe them out, to become eligible for certain coverage. Because we acted fiscally responsible, the government will not help us. We are not wealthy. Our kids do not have millions set up in a trust fund somewhere. Our 401k will not last us very long, especially given the fact that my husband was just laid off. But rather than helping us to protect those assets, which will make our family less of a burden down the road, we need to burn through them- a scenario familiar to many people before they reach the level of poverty the government deems worthy of assistance.
It is a difficult situation to understand unless you're in it. People do not want to rely on government aid, however the burden of raising a medically needy family member will consume, in time, all your resources. The average middle class family does not have a huge amount of savings and usually has a bit of debt. It is hard to adjust an already tight budget for the unpredictable financial demands that accompany any medical disability.
Once a family comes to rely on the system, it is hard to escape and when you are trapped in a hopeless situation, it is easy to see how some people come to take advantage of the system or feel entitled to its benefits. The system itself is so demeaning, it is easy to be callous and demeaning right back at it. What would be your enticement for improving your situation? It's not simply a matter of picking yourself up by your bootstraps. Medical costs are high. You might be able to save a thousand here or a hundred here but when your child requires an emergency visit that totals tens of thousands of dollars, pinching pennies will not help you. Outside assistance is necessary because, who has tens of thousands of dollars in reserve?
The government does of course, but to them, you are a number or case file and in order to be fair and not have their resources abused you must take a number, wait your turn and follow the government protocol. You might never meet the person who processes your request or set foot in that departments office. To my friends and family, I am Kelly M., mother of Fulton. If I am in need, they will step forward and offer prayers, meals, money or just a shoulder to cry on within hours day or night. I can visit them or they will show up at my door and they give only because they want too and not because I filled out my form properly and waited six months for them to process my request.
How can we as Catholics, and Christians, save people from falling into a hopeless system?

Gratitude

Today my family walked together in a fundraiser for my son Fulton. Around two dozen people came out to walk and many more pledged donations. We were astounded when the total amount came in at over $6,000, with more donations on the way. After such an overwhelming show of love and generosity, I've been moved to mention briefly, gratitude.
Being the recipient of such charity is difficult because you know you can never repay all the people for all the kindness and generosity they've shown you. It does however motivate one to want to give even more the next time an opportunity comes around. Looking over the donations, I was reminded of the story of the women who gave her last two coins. In the midst of an economic crisis, people are turning out their pockets, for my family. How often I've said, we don't have any extra money or time to give to this or that. How foolish I feel now, and how humbled. So I have immense gratitude towards those who gave so much when they are also struggling and I owe them a debt of thanks for schooling me in charity.
These people are only one of many blessings the Lord has given us in the midst of our trials. It would be easy to forget or dismiss them, and perhaps without grace I would, but thankfully, despite it all, I can wake up every morning and go to bed each night and thank God for many, many things in addition to my generous friends; the best husband in the world, four wonderful children, a roof over our heads, a garden and hens to produce food, space to run and savings in the bank just to name a few. God is so good. May He give me plenty of opportunities to repay that which has been so freely given to me.

"I do know that my nature is such that gratitude alone, gratitude for the faith, that most splendid gift, a gift not earned by me, a gratuitous gift, is enough to bind me in holy obedience to Holy Mother Church and her commands." -DD 12/17/66

A Place for Families Part II- Crazy Ideas

I believe families can play a key role in the Catholic Worker Movement. Families should strive to be self sustaining and independent. Ideally, the needs of the family can be met on the homestead. Items that cannot be made or grown could be bartered for or purchased with money earned through the sale of surplus farm goods or labor. In addition, families could earn money by taking in guests and teaching self reliant skills. People on the road to self sufficiency could stay for a week, study gardening, and help in the harvest. Perhaps pick berries and then can them. Or a hands on course in voluntary poverty, and making do with less. The possibilities for educational outreach are only limited to the abilities of the families.
Husbands and fathers shouldn't have to spend 8 or more hours a day away from their families to earn enough money for life's necessities. Key word: necessities. Say you earn $10 an hour; is the latest techo gadget priced at $300 worth sitting at your desk 30 hours for? Would you work almost one week just for an Ipod? I would rather stay one step behind the Jones and spend more time at home.
These families could then support their local hospitality house through donation of excess produce, meat, dairy items, etc., thus cutting the operating cost of the house and the need for outside donations. Worker families could also volunteer their time as available at the hospitality house (which would also need some full time single, celibate resident workers.) Should the family experience a rough time, the house and other supporting families would be there to help out. It's a community without the commune. This model is similar to the current lifestyle of the Amish and some Mennonite, except their local church acts as a hospitality house. These believers place their trust so fully in the support of their congregations that most Amish and Mennonite do not have any type of insurance policy. A serious medical expense is shared by all, as is the lost wages from an accident at work. Shouldn't we, as Catholics, be able to expect the same from each other?

Too soft?

Some may criticize me saying, 'Why should I help those people who won't help themselves?' 'I won't give money to a man on the street because he may use it for drugs. It's better to give to charity.'
Is that so? Really? I don't remember the Lord walking up to anyone and saying "Pull yourself up by your own bootstraps!"
It is not for us to judge those in need. Some may be lazy, or mentally ill or genuinely in need. It doesn't matter. If someone comes to you in need of food and you turn them away you will have to answer for that at the pearly gates. If you give money to someone on the streets and they buy heroin with it, they will have to answer for that as well.
However, like the Lord said to the women who was to be stoned, 'Go and sin no more.' Lets not forget that the spiritual works of mercy go hand in hand with the corporal. Giving a hot meal to a prostitute is different than distributing condoms to her. Your actions must lead souls to heaven, not hell. So admonish the sinner and feed the hungry.
If we can offer a Catholic home for people to retreat to, we offer the first step towards hope and a new start. It is only through love and charity we can lift up people who have fallen to temptation and ultimately the devil. When people come to know God and want to live for him, they cannot fall prey to old habits.

Responsibility

So I say, lets not leave it up to the government. Let's not leave it up to the big charities. Let's take care of the problem ourselves. Let's be responsible for one another. I know responsibility is a novel concept in these times but hear me out. The government and it's money is spent on the whims of an administration and/or a political party. Budgets are cut, regulations change and next thing you know a homeless program (or say adoption) program your running is out most of its money. And if you want to run a truly Catholic house of hospitality you're going to run into all sorts of Church and state crap you probably don't want to deal with. I'm not taking down my statue of the Virgin because it offends the government. Oh, does the crucifix in the dining room 'infringe on your religious freedom'? Tough.
Keep operations small and local. Take care of the community and the community will take care of you in return. See how they love each other.
I want to provide services to people that the government shouldn't be responsible for. If we all acted like Christians maybe our taxes wouldn't be so high. Perhaps?

Passing the buck

Imagine if every Catholic Church in America had a hospitality house associated with it? Or if every Christian Church even? If we all followed the Corporal works of mercy in a very hands on way, daily, would we need a welfare system? If every family kept their homes open to those in need, friends, family, even strangers, would we need shelters?
A quote from Maurin I keep coming across is a reference he makes to early Christians. The Romans said (of the Christians) see how they love one another. Of Christians today, society says, see how they pass the buck.
Do we give money each week at church or during the annual United Way Pledge and then sit back and say, 'I've done my part.'? I have. Do we pay our taxes year after year and expect the government to make poverty go away with our money?
It is easier to let others get their hands dirty. It is easier to do the bare minimum of what our faith asks of us. When the rich young man approached Jesus and was told to sell all he had and follow Him, he turned away sad. In today's world most of us our like the rich young man, we have much in the way of material things and we are good people. We expect to go to heaven because we go to Mass weekly and treat others we encounter in our daily life nicely. We're content to live in our bubbles. We know only of the poor through TV and movies.
The Lord did not stay in a bubble and minister 'in his comfort zone.' He went out and found those who needed help and served them. As did the apostles. Peter didn't keep his job as a fisherman on the side in case the whole disciple thing didn't pan out. Following Jesus isn't a part-time job.
Being a Christian is uncomfortable at times. If you're always comfortable in your faith, than you're doing something wrong. We all need to find the tax collectors, prostitute, lepers and lame of today's society, swallow hard, smile and invite them into our homes with arms wide open.
This is very scary to me. But I know it is what I must do. When I feel I can't do something I just imagine talking to Jesus and trying to convince him of my reasons against whatever it is. Then, when I get that awkward feeling in my stomach (like a 13yr old explaining to his dad why they were crawling in a window at 1am.) I just start praying for the grace to do His will.