Tag Archives: parent

What do families mean by single point of entry ?

April 8th, 2011

The term “single point of entry” has surfaced again with a vengeance.  There is a proposal on the table to create a single state agency to serve children instead of the multiple ones that exist now.  Part of the thinking is that parents have asked for a single point of entry for years, so this is a way to grant that wish.  But do parents mean the same thing as the designers do?

Families have long been frustrated by going to one door after another, only to find their child has too high an IQ, too vague a diagnosis or they just don’t meet the requirements.  It’s like walking down a mall full of stores and being told that we’re out of this or go try our competitor over there.  Lots of doors to go through, but you can’t get what you need. But often a Walmart isn’t much help either.  You can go through a single door, but the shelves might need restocking or you just can’t locate the item you need.  What parents really want is the right door the first time. 

Finding the right door is not achieved by creating a single door.  Finding the right door requires knowledge, the answers to a skilled set of questions and some strategic thinking about what would be the best place to start.  Many parents who are looking for services are in the midst of a growing crisis, still learning the jargon and trying to find someone who knows what to do.  They usually need a savvy guide, not a Walmart greeter. 

A number of states besides Massachusetts have worked to create a single point of entry.  While hoping that families will be able to access services with fewer steps, the new design also benefits the state.  It can provide a single structure where information about the child and family can be shared, encourage a single assessment and make contracting with multiple providers more streamlined.  These measures can make the children’s system more efficient and reduce duplication.  But does this also benefit children, youth and families? Data sharing about children and their families often means changing privacy standards and a single assessment can trade off a detailed evaluation for a broader set of standard questions.

Most children and families are complicated and likely to remain so.  Children and youth with mental health needs take that complexity to another level.  Finding a single point of entry can be the entrance to a place that welcomes families or a single place to screen families out.  For many years, a Massachusetts initiative called the Collaborative Assessment Program worked with families whose children were at risk of going to the hospital or a residential program, creating clear profile of the child’s needs and a plan of action.  At the end of the program, CAP referred families to the Department of Mental Health or the Department of Social Services (now DCF).  Some families disagreed and opted out of services, saying they wished they had applied separately to the agency that matched their needs.  For them, the single point of entry ignored family voice and choice.

When my son was 9, his school told me they were going to refer us to DCF (then DSS) because he needed more services than insurance and school alone could provide.  I went that same day to their local office, told them of my conversation with the school and painted the best picture I could of my son’s behaviors, phobias and mood swings.  The worker doing intake listened to my entire story, put down her pen and said, “We are not the agency you need.”  She explained what DMH had to offer and walked me to their office. 

What that worker did is what every parent wants.  Someone to listen carefully, help you understand the options and make sure you find the right door.  She carefully listened for my son’s needs and tried to figure out how to match those needs, not exclude him from services.  What I needed, as most parents do, was a knowledgeable and skilled guide to find the right door when I went looking for it.

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Play the cards you have

March 14th, 2011

Benjamin Franklin is thought to have said, “If you want to make a friend, let someone do you a favor.”  It’s wise advice that’s often overlooked by parents whose children have mental health needs.

A number of years ago, I was hitting brick wall after brick wall trying to find a child psychiatrist for my son.  The one we’d had was leaving the state, a famous institution turned us down because his need for frequent appointments didn’t fit their scheduling and one of the few with openings told me that the medications he was comfortable prescribing had already been tried, so there was nothing he could offer.  I had explored every lead and followed all the right steps.  Now I was feeling like a failure. 

Many parents reach this point, often more than once.  They are overworked, overstressed and feel defeated. To make matters worse, many of us are also reluctant to ask for help, thinking that parenting a son or daughter is something people do all over the world or have for many generations.  The situation is even worse when your child has significant mental health needs.  One pervasive myth is that people with mental health challenges should be able to snap out of it, get a grip or pull themselves up by the bootstraps.  If they are a child or teen, their parents should be able to get them to do it.  Myths like these have an insidious way of undermining our confidence.

When I hit my wall, I turned to a friend, who was not only parenting a child like mine, but was also an advocate.  “We have to all play the cards we have,” she said. “Some people have a trust fund, or they’re a doctor who knows other doctors. We don’t have that.  But we network, we’ve done favors for others and we can simply ask them to jump in. That’s the card we have to play.”

Gretchen Rubin, author of the NY Times bestseller, The Happiness Project, says that one of the secrets of adulthood is: It’s okay to ask for help. Many families pride themselves on their independence and New Englanders can be the original do-it-yourselfers.   One mother recently told me that she was afraid that asking for help made it seem as if she were unable to take care of her child and would be judged. However, asking for assistance signals your trust and your respect for the other person’s expertise.  We can ask for help, advice or suggestions. 

The best tool we have is ourselves and the greatest advantage we have is the relationships we build.  Most of us do favors for others without expecting any return and freely offer our help to change things in our neighborhood or community.  But we forget that networking goes both ways.  The cards we have to play are those relationships and the network we are part of. 

If someone does you a favor they are investing in you, your family and your success.  Be sure to thank them for it.  Just don’t forget to ask in the first place.

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Getting To “Culturally Comfortable”

January 16th, 2011

When programs strive to be culturally competent, the result should be that families are “culturally comfortable.” Most parents and youth can tell you whether it is easy and comfortable for them to be connected to and involved with a program. Feeling culturally comfortable helps families decide how they view a program, a worker or a service.

I first encountered the term “culturally comfortable” in the guide, Working with Families of Children in the Juvenile Justice and Corrections Systems. As Trina Osher and Barbara Huff note, some families may require a boost to become involved with their child’s services or program. They list some key strategies to provide that boost and providing culturally comfortable settings is a priority.

The term “culturally comfortable” has been cropping up in health and education settings for a number of years now. Many urban health centers have changed how they practice, finding new ways to share health information and deliver care. Some ask patients how they think a condition should be treated before offering their own recommendations. One pediatric practice in Virginia explored creating a “culturally comfortble” medical home. Some preschool educators have also been strong proponents of ensuring that their classrooms are culturally comfortable. Beverly Gulley and Nillofur Zobairi write that educators need to “know and understand the family’s cultural orientation to make a child feel comfortable and secure, and provide a sense of continuity.”

While cultural competence is a core value for both wraparound and creating a systems of care in children’s mental health, the notion of “culturally comfortable” settings or practice has yet to show up. I think it’s about time. Cultural competence is a rich, complex yet formal standard and most parents and youth would be hard pressed to say how close a setting or practice is to getting there. Yet they would be able to judge whether it was culturally comfortable. Feeling comfortable or uncomfortable is something we are all familiar with. Culturally comfortable settings, dialogues and practice make families feel welcome and respected.

Increasing cultural competence in the delivery of mental health services for children can help reduce disparities and increase access. But these results are frequently unknown to families, especially if the changes are gradual. Changing a setting, practice or dialogue so that it becomes more “culturally comfortable” is something that families can notice and determine for themselves. Determining whether that change is happening can empower parents and youth. Early in the family movement, parents often judged whether materials, programs or approaches were family friendly and later family dirven. So, too, can parents and youth figure out if materials or programs today are culturally comfortable.

Building an approach that is “culturally comfortable” starts with communication and awareness. Find out what the family values, who its members are, what the concerns and goals for its children may be. Ask families what matters to them. Find out what is private in a family and what is easily shared. Culture influences parenting and family behaviors, including meals, sleep, how to dress, interaction with both adults and other children, health care, how to show affection and respect, ways of celebrating and what occasions to celebrate. Many different family configurations are out there. Celebrate moms, dads, grandparents, extended family members, siblings, and others important to children. Model respect and show that customs, languages, cultures, and physical attributes different from your own are important and to be honored. Diversity in our society should be valued and enjoyed, not considered a threat to the values or lifestyle of any group.

Catherine Stakeman, Maine NASW, said that “becoming culturally comfortable between all cultures is a journey, and there is always room for improvement.” To make it happen, it must be everyone’s responsibility.

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My Top Stories On Children’s Mental Health In 2010 — What Are Yours?

January 1st, 2011

We are all looking forward to 2011, making our resolutions and hoping, as we always do, for a better year. The end of the year is also the time when we look back before we look forward. There were many events in 2010 which will impact all of us who parent children with mental health needs or work with them and their families. Here are my picks for the top stories. What are yours?

#1. The health care reform law passed and began to offer protections for consumers across the country and the promise of coverage to the uninsured. The passage of the Affordable Care Act was signed into law by President Obama in March and some portions of the new law are already in effect including that young adults can remain on their parents’ insurance plans. The law requires mental health to be covered and people cannot be turned away or dropped from coverage because of pre-existing conditions. Although Massachusetts has had health care reform since 2006, many families have insurance that is solely regulated by federal law and this will change things for the better for them.

#2. Federal mental health parity was an under-the-radar story which will also have a major impact. The new federal mental health parity law, enacted in 2008, went into effect in 2010. For the first time, mental illness must be treated by insurance companies in the same way as other chronic conditions, like diabetes and hypertension. Parity is incredibly important to those affected by mental health condiditons, yet it was not widely noted while health care reform was debated. Again, while Massachusetts has had a mental health parity law, many families will only see changes under federal parity.

#3. Following an outbreak of LGBT teen suicides across the country , columnist Dan Savage launched the “It Gets Better” campaign in September, which lets gay teens know that if they hang in there, life will improve after high school. It’s a brilliant campaign and thousands of people (both celebrities and regular people) have posted personal stories on YouTube in an effort to offer hope to countless LGBT youth worldwide and shine a spotlight on the harm caused by bullies. LGBT youth are up to four times more likely to attempt suicide than their heterosexual peers according to the 2006 Massachusetts youth risk survey.

#4. The bullying and subsequent suicide of Phoebe Prince in January went from a local tragedy to an international media storm about bullying in schools. The tragedy of her death came just months after the suicide of 11-year-old Carl Walker-Hoover of Springfield and galvanized advocates, lawmakers and the media to advocate for change. In April, the Massachusetts Legislature passed a new law mandating that every school system in the Commonwealth come up with a plan by the end of the year for dealing with bullying issues.

#5. Another local event which captured national media attention was the trial and conviction of Rebecca Riley‘s mother (in January) and father (in September). Rebecca Riley was found dead on the floor of her home in 2006 from the combined effects of Clonidine, Depakote and other medications. Each of her parents was found guilty of murder. Many national and local reporters wrote and narrated stories that doubted the existence of mental health issues in very young children as well as the use of medication. Unsurprisingly, a complicated situation was pared down to a discussion of mental health, medication and young children.

#6. One of the most important stories of 2010 never got media coverage. The first full year of the implementation of Children’s Behavioral Health Intiative, although imperfect, continues to provide Massachusetts families with home and community based services on a previously unheard of scale. Nearly 70% of children and teens are receiving behavioral health screens at well-child visits, and almost 6500 children and youth have received care coordination with nearly 19,000 experiencing at least one of the new remedy services. Families report that they feel they are considered a partner in their child’s treatment and are particularly satisfied with the services provided by a family partner. What is striking is that while other states have created similar services, none has done it on such a scale. CBHI is available across the state to children with signicant mental health needs on MassHealth.

#7. In October, the Boston Globe reported that many children are deemed “too acute” by some hospitals when asked to consider an admission. Children and teens who are violent, hallucinate or have complicated psychiatric histories are most likely to be turned away. Just last week I heard a story of a teen waiting in an emergency room after being turned away from hospitals in Massaachusetts and two other states. Sounds like a story we’ll hear more of in 2011.

These are my top stories. Did I miss any or are there any that should not have made the list?

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Dear Santa

December 19th, 2010

Meri Viano is a guest blogger for Hold On, It’s Not Over and the mother of three children. This is her letter to Santa.

Dear Santa,

I have been exceptionally good this year. Well, at least I’ve tried really hard to be good. But there are all sorts of things that can get in the way.

I’ve been doing extra chores this year. It’s hard to pick up after children that hide things, especially cookie dough behind the cabinets, snacks in drawers, and even the papers that get ripped up into a million little pieces because it is an “activity” that keeps one of my kids busy. It can take a huge amount of planning to get the chores done and also manage to pick up and move pictures to the holes in the walls so that the visitors do not feel they have entered a “unsafe ” place.

I am not even talking about the singing that I have to do to get my daughter to eat, or the dancing I must do to get her to drink. It is difficult being the mom and the entertainer. Combining discipline and building positive self esteem is hard. NOT like the Italian home I grew up in.. you knew if the wooden spoon was raised you ran!

I have also tried to go grocery shopping at 11pm so that my children are sleeping all nestled in their beds and limit the number of customers who point at me and say “That”s the mom with the unruly child.” It also helps with the child who feels he needs to eat certain things to keep the voices in his head away.. if you drink lots of water you will not hear the scratching on the window that is not there.

I am trying to be nice to everyone but Santa, have you ever called Mobile Crisis? They want you to schedule a time for the crisis! When you call, they seem to always say it is shift change and they won’t have a clinician in for four hours. How do you pause a crisis? I call, at first to explain, then I’m more demanding but still patient, and then okay, I talk about the laws and then I’m called the parent OUT OF CONTROL.

Santa, I’ve spent a lot of time teaching too. Everywhere I go it seems I have teaching to do — grocery stores, banks, even people in cars looking as you are waiting for the stop light. Seems like everyone has to LOOK at our kids and judge us. So I am trying Santa.. but it gets hard. The new item in the state is Wraparound. What they don’t tell you is…well, can you imagine not believing in strength based families? Why is it such a hard concept? And you know my tough child–the one that hears voices–who doesn’t know what to do and sometimes wonders why he should continue to try? This Wraparound thing would never work for him because he is too unique–the system calls him too complicated.

Finally.. I really want to go back to DMH and get a caseworker that believes in families, believes in clinical help. They call back, they support, and guess what .. they do not want to file 51As. I am trying to believe that the professionals in Wraparound will get it.. but how many times do you need to change teams in order to succeed?

So I hope all this counts. My list this year is a list of the things I think would help me with the system. It’s a little like a top 10 countdown (I would love to be Jay Leno, or Letterman). Will people get my sense of humor? It is different then most… I guess not really if you have a child like mine.

The items on my list are in the order of importance, so if there are too many things for you to carry, please delete as few of the items as possible, starting from the bottom of my list.

Santa, I will leave you organic oatmeal cookies and soy milk (in case you are lactose intolerant) and carrots for your reindeer (organically grown of course).

Thank you in advance. I know you receive a lot of letters so you don’t need to reply unless there is a problem with my list or you need services for another child. I have taught myself to be resourceful so please let me know if I can help someone else get it right!

10. Mobile crisis to move in my home

9. Clinicians who will talk to all parts of the team

8. Schools that do not depend on the parent to play expert, and then blame them if it doesn’t work

7. A secretary

6. A full time nurse – those somatic symptoms creep up on us

5. News station to teach the public about children’s mental health

4. Safety protection.. not what you are thinking… i want bubble wrap so when the heat is hot.. i am protected!!!

3. Another set of eyes.. reality tv please. The money would pay for the lawyers.

2. I always wanted more children, so for this one could each kid in DCF or any other system get a someone to call mom, dad, grandma or grandpa?

1. Ok.. I have decided.. nothing can be cut off my list…I need it all to make things work

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