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?

 

 

 

 

 

 

Letter #7: Entering The Early Intervention System

Letter 7

Dear New Autism Mom,

I have returned to the coffee shop tonight, and find myself thinking of you and offering prayers on your behalf. How are you doing?

We've been super busy since the school year started.  It always amazes me how many meetings are required in order to start another year!

As I sat in a meeting this morning, I wondered if you've been connected to your early intervention team yet.  I remember the first time we met with ours, it was horrible. I had been in similar meetings years ago, but as a service provider. Now as a parent advocating for her own child, it's a whole different story. Especially since I avoid conflict at almost all cost.  But for my child? The price was too high and Momma Bear emerged from deep places within. Prior to this, I didn't know the heart has such depths! 

Getting services in place was an intense time of my life. I had not fully grasped what it meant to raise a child with autism (but, do we ever?), and I had not come to the point of embracing autism whole heartedly, either.  The multitude of messages out there about the best treatment, the best services, how many hours, and all I was learning along with the emotional toll, was completely overwhelming.

Having to fight for the services that we needed was a whole other stress that I did not anticipate or want to deal with. But, with budget cuts and dropped services it is more important than ever to learn how to fight for our children and make sure he or she receives the therapies they need.

One of the important things I learned during this time, is that no matter what "they" say, no matter what the "gold standard" is or what therapy is deemed to have the most scientific evidence backing it up,  the truth is you know your child best. There is no one just like him. There may be thousands of studies saying a certain method is the best choice, but it may not be the right one for your child. Then again, maybe it is. Only you are perfectly skilled in dealing with your child. You know what works, what he may gravitate toward or intensely dislike. You know how much is too much, and how far you can push to reap a reward. You are the specialist for your child.

I know you probably don't feel that way right now, especially if you are still in the midst of learning everything you can about autism.  But it is true. God intentionally gave you your child. He saw you and declared you the perfect mom for him. You have the skills and love your child needs,  you have the background that will lean you one way or the other as you make decisions.

That being said, God also put people in our lives to help us. And some of those people are therapists and teachers. Where would we be without them?  They have taught me many volumes worth of material. Some of what they taught me was about fighting for the services that are best for my child even when it goes against the current gold standard treatment. They gave me the support I needed to fight for the needs of my children.

Many times, we had to really fight hard. The state didn't want to put money into a type of therapy they didn't consider as good as another. So I had to learn how to fight. How to advocate for my children and I've learned the very best way to do it.  And that, my dear friend, is what I have wanted to write to you about. Because the system can seem so big and in-penatratable, and, well it's plain intimidating!

When I was going head to head, advocating with the director of early intervention, I was reading the book of Esther. In the story, Esther had to change the King's mind or their whole race would be eliminated. Talk about pressure! But she knew that the battle was ultimately not hers, but Gods.

There is a verse in Proverbs that says, "In the LORDS's hand, the king's heart is a stream of water that He channels toward all who please him."

This is the verse I cling to whenever big problems arise.

When the "king" of early intervention refused to give my son enough hours of preschool to be effective, I prayed that God would change her heart. That He would channel it in our favor. And do you know what happened? She called me personally, and granted the entire preschool an increase in therapeutic hours! It had been a 15 hour a week school, instead of 30 hours a week like many others because it was not their preferred therapy style.

When my other son started Kindergarten he needed an aid on the bus. The school refused to grant it because of money and a lack of qualified personnel.  After a long frustrating fight, I remembered that verse and prayed again that the kings heart would be changed to favor us. And that very weekend--a holiday weekend, even-- the Special Education Director called to tell us she would grant our request!

I could advocate long and hard with all my reasons why we needed the services, but not make even a dent in the heart of the system. But when I pray for God to soften the hearts of the powers that be, and to channel it toward us, He does! And it's as easy for Him to do it as it is to dip His finger in water and change it's course.

The battle is not ours, it is in the hands of someone much bigger. Someone who loves us tremendously. Someone who loves our children even more than we do.

Until next time,

Merri