In-Home Services: A Call To Value The Family

In Home SupportsServices...

In-home supports, Home and Community Therapy (HCT), Specialized Supports.

These are words that make me cringe at the moment as we just traumatically ended one and are about to start another.

It bothers me that my gut reaction is to cringe, because I know it can be so very good. I know the relationships that can be built between in-home staff and parents, between staff and the child(ren). I know because I used to work for an agency in the later half of the 90's that did it as right as I've ever seen it done and they are still going strong.

They just happen to be in Pennsylvania and we are in Maine.


The Problem

Budget cuts, system changes, different ways of thinking, different views on supports with the rise of autism... this (and more) leads in to the changes we are seeing now, compared to when I was working in the field.

There is no money to train people to work with our kids (and the number of kids needing services is rising exponentially), so agencies rely on stressed out parents to train the new support staff.  

There is no money, so they hire people right out of college with little to no real-life experience, to write plans to help the family.  

There is no money, so the staff are paid minimally. The people who are "naturals" in this field move on. Support staff positions are a launching pad for higher paying jobs. And who could blame them? They DO deserve to be paid more. 

And the unspoken expectation is:  Families just need to suck it up. Don't ask for much, just take what we give you and above all, do not complain. We can't give any better than we have. We don't have  highly trained staff and we don't have money. Just be happy you have a warm body in your house. We've done our job.

Over and over again, this is what I hear from other families:

"It isn't worth the effort I put in to training staff that don't work out, or quit a few months after starting."

"It's like glorified babysitting when we need real help."

"They think the issues we have are due to bad parenting."

"The problems they create cancel out the help they provide."

"The turn over in staffing is too hard on my children. It just isn't worth it."

And most recently, a friend told me her horror story where the disgruntled staff "got even" with her family by accusing them of child abuse.  Every family's nightmare!


How can it change? 

So what do we do with a problem like this?

I have been thinking about it, and I don't know what will bring about that kind of a change apart from a system-wide paradigm shift that puts the value back on the family.  

And a change like that is not going to happen--at least not completely--apart from a move of God.

When agencies providing services to families don't have respect for the family and don't understand the impact they have on it, a lot of damage can be done in a very short time.  

The focus the last decade or two has been on the child alone. But the child is not alone! The child is a part of a family and when you impact the child, you impact that family.  

When you help a family function more typically, you help the child in need of services. But if you ignore the family dynamics and focus only on one child, the system falls apart.  


What Would Valuing The Family Look Like?

When the family is valued and given the respect it needs, services will look very different. Instead of the list above being the norm, something like this will be the norm:

*Support staff come on board with the expectation that they will be here for at least one year, to provide consisted support, to minimize trauma on children loosing their best friend, and to minimize the burden of training parents have to provide.

*Staff and Supervisors will be professional, ethical and moral. They will uphold and support the family beliefs and will be a role model for the children.

*There will be less required meetings so that when we meet, it will be for specific purposes (not just because of a required number of meetings per month)  and respect the parents time. 

*Staff will work on helping the child who is receiving services, to interact in the home with siblings and parents, or with other natural supports (such as church). For quite a while the focus is has been on taking the kids out of the house to work on social skills in the community where they are unlikely to see the people they meet again, making it impossible for true relationships to be formed).

*Agencies will listen to parents and believe us when we say a certain person is not working out and work toward finding a new person without having to start over at the end of the waiting list to start the entire process over again (which can take months to years). The staff (and agency) needs to be a good fit with the family (on both sides) for treatment to be effective.

*The State will provide more money specifically for training staff, including trainings in family dynamics. Funds will be available for ongoing training specific to the child they are working with (such as diagnosis-specific conferences or internal trainings).

*Supervisors will do the initial training with the support staff for the first couple of shifts, to take some of the weight off the shoulders of parents. Supervisors will supervise the staff on a monthly basis at first, and then as needed (but no less than quarterly).

*Agencies will pay support staff what they are worth, so they will also feel valued and motivated to do a good job in the job they have. Staff will be offered rewards and bonuses for working on complicated and challenging cases, or have tough shifts that are hard to fill.

Where do we go from here? 

#1)  Pray.  

I am reminded of 2 Chronicles 7:14.  "If my people who are called by my name humble themselves, and pray and seek my face and turn from their wicked ways, then I will hear from heaven and will forgive their sin and heal their land."

*We need to seek God, asking Him to forgive us--our culture-- for not placing proper value on the family.

*We need to pray fervently for God to bend the hearts of those in position to make the needed changes.

*We need to pray for the politics behind these changes, that there will be increased funding for the changes that are needed.

*We need to pray for families to be bold enough to uphold the value we have in God--both individually and as a whole.  

*Families need to stand firm on the truth and promises of God, and not allow the system devalue us. We need to be brave and act like who God declares us to be.

#2) Wait with hope and expectancy

This week as I was wallowing in the pit of despair over the mountainous problems with the system and the particular agency we have been dealing with,  I opened a collection of "Braver Living" Bible verses created from key verses in The Cure For The Perfect Life by Kathi Lipp & Cheri Gregory.

One card amidst the many in the deck, stood out to me and filled me with hope. 

Micah 7:7  "But as for me, I will look to the Lord and confident in Him I will keep watch; I will wait with hope and expectancy for the God of my salvation; my God will hear me."

We can be confident that our God will hear us as we seek him. We can expect for him to move on our behalf.

Will you join in prayer, and watch and wait with hope and expectancy with me?  


I'd love to hear from you!

What are your experiences with in-home supports?

What changes would you like to see?







How We Become Rich When We Are Poor In Spirit

Poor In Spirit 2

Parents who've experienced having a child diagnosed with a disability are amongst those most capable of understanding what it means to be poor in spirit.

Not much else will make you stop in your tracks to re-evaluate your outlook on life and your future more than this. Because often, your child is the dream of your life come true. And dreams you never knew you were dreaming are crushed when typical milestones "every child goes through" are skipped over or missed. 

You wonder what this means. You worry about the future.

And you feel completely void inside. You loose the meaning of life that you held as you come to grips with the diagnosis, and learn how to move on to live in your new normal. And most importantly, you learn how to reconcile this unexpected life-changing difficulty, with God.

Is He still good?
Did He make a mistake?
Does He even see me?
Does He know what He's done to me?
Does He understand what this means for our family? For my child?

We feel completely alone and spiritually bankrupt: we are poor in spirit.

"Blessed are the Poor in spirit, for theirs is the Kingdom of Heaven." Matthew 5:3  The Message put it this way, " You're blessed when you're at the end of your rope. With less of you there is more of God and his rule." 

When we are poor in spirit through any tragedy, we are empty, lost in the echo of our cavernous self. An empty hole of darkness threatens to consume us.

And in this place, we can cling to God, or we can cling to something or someone else. But we do cling. We can't survive in that dark abyss for long.

When I first learned of my son's diagnosis and I shared it with my friend, the first words out of her mouth as she took in what I was saying were, "God is holy. He doesn't make mistakes". Those words reached through my pain and grabbed me. I clung to them then and I still do now.

If God allowed this autism on purpose, then He has a plan, a good plan for me, my family and my son. Whenever I find myself falling back into the pit of fear, those words echo in my ears, "God is holy, he doesn't make mistakes. God is good, and his plan is wild beyond imagination."

And from clinging to this, Treasures in the Dust was born. It's being raised up to share comfort and encourage others who are up late at night, despairing over their new diagnosis. 

When we choose to cling to God, He engages with us. He blesses us. He fills us up with joy and peace.

We spend time with Him through his Word and prayer, and He teaches us His promises.

*We know He has a purpose for us, for our kids and family, because He told us so.  

*We know there is a hope and a future for us, because he whispers it into our ears so intimately.  

*We know more than our neighbor who has "the perfect life".

*We know more than our friends who have the "perfect children".

We know, because we were brought to the point where the rope ends, and found Jesus there, arms outstretched. He's waiting to carry us back up, but not to the same place. No, He brings us up to a new spacious place. One that perceives things through His eyes, because He is there showing us how to see. And Jesus becomes our treasure because He now means more to us than we could ever imagine.

He has saved us.

We are blessed!

Had the diagnosis not happened, the tragedy not occurred, we would not have realized how deeply we need Jesus.

We would not know that the life we were living before, was nothing compared to the life Jesus has brought us to.

We would not know God the way we do now.

We are richly blessed: because of the depths of our hurt, we experience an incomparable comfort from God that is powerful to shift our view on life, and leaves us capable to comfort others and bring them this same Hope.  

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God." 2 Corinthians 1:3-4