Maria Daane, Navigating Transitions in Your I/DD Child’s Life

Parents often get decision fatigue and feel overwhelmed and isolated. We’ve heard that PHP believes parents shouldn’t feel alone on this journey. How does PHP build a community of support for parents?

Maria: So I think it harbors back to the beginning of parents, helping parents. We were started by a group of parents, 47 years ago in San Jose, who had children primarily with developmental disabilities, and as they were closing the institutions and families were keeping children with developmental disabilities in their homes, these parents that rightfully discovered that they needed each other in order to understand how to get resources for their children in order to be good parents to kids with developmental disabilities. Since that time we’ve expanded to include all disabilities but the core of it is the same parents who are supported and informed will be able to build the brightest future for their children.

PHP develops this community because nearly every member of our staff is, in fact, a parent of a child or adult child with disabilities.They walked the journey, and they understand so that when a new parent calls there’s an immediate understanding that this is a person who has walked the journey of parenting a child with a disability in their own experience, and as well we try to create opportunities for people to meet others and so we have over 20 different support groups that parents can join. 

What are support groups? It’s supported information, and if you want a great answer to a question, you bring it to a group of other parents who are in a similar situation, and often the answer is right there in that room. So there’s just a great exchange of ideas and troubleshooting as parents journey together. 

Almost everything we do is free. So people can enter regardless of ability to pay, and we serve in English, Spanish, and Vietnamese.

Dana: I have to say, as a parent myself, and when my son was very young, we really struggled, and I wish we had had that kind of a resource or support group. If nothing else, just to realize that we weren’t completely alone in this as well as of course, to be able to share meaningful things that we’ve learned.

What do you find to be the most underutilized resource that most families of young adults with I/DD could benefit from? 

Maria: Parents Helping Parents has a resource directory maintained by a great volunteer named Kate, who makes sure that parents have resources at their fingertips.We have 2,600 resources for recreational and legal and financial and educational available to parents that can assist them in terms of what’s underutilized. I think perhaps the most underutilized thing is accessing learning communities and learning alongside each other because there’s so much information coming at you. It could be hard to differentiate between what you should really pay attention to and focus on and what can wait or be discarded. And so, following an opinion, leaders who are part of groups who specialize in your child’s disability or part of parent centers like Parent Helping Parents can really help you focus on which resources might be more helpful to your family and that you can access if you knew they existed.

Where would someone who’s new to this community start when they’re first doing research to find support for their loved ones?

Maria: We usually encourage parents who have a child with a new diagnosis to really connect with both a parent center like parent’s helping as well as the disability-specific organization that may support their child’s disability such as autism society or autism speaks or Down syndrome connection and so that they’re getting both information specific to the disability as well as information about the parenting journey. Here, at PHP, we have a great early start team that helps the younger ones who have new diagnoses. We also have a program called Sharing the Journey, which explains the landscape and helps parents as a group go through a series of classes to understand how the parenting journey is different when you have a child with a disability.

Dana: And what about the regional center?

Maria: Usually parents of children with intellectual disabilities are often connecting with the regional center as well, and we support parents in understanding what their entitled services are underneath the Lanterman Act and so depending on the age there may be more or less services available through the regional center.

Dana: Being the caregiver of a child with disabilities has its own unique set of challenges that other parents don’t always understand what’s needed to help a family thrive in this area.

What is needed to help a family thrive in this area?

Maria: So we have an expression at PHP that families need a tribe. Unfortunately, sometimes what happens with families when their child has a disability, especially if it’s a profound disability with a lot of behavioral aspects, is that the tribe that their family was a part of before that child may not be able to support and wrap around that family. Sometimes their religious community or their potluck group in the neighborhood, or their family of origin sort of backs away because they’re not sure how to help. It’s really key that families find a tribe that they can connect with, whether it’s a national Facebook group or a local support group through the disability-specific organization that they join or through parents helping parents it’s really important to have a tribe of people who are walking a similar journey, who understand the what it’s like to go to Thanksgiving and have in-laws tell you how to parent your child, whose challenges are very different than the children that you’re in less parented or what it’s like to have the Fourth of July come and your family is gonna have a different experience on the Fourth of July, because of the sensory challenges. It’s just important to have other people who understand what, what, how life is different for you.

Parents see how life transitions can be especially difficult for their special needs child. The transition to adulthood and housing away from family is perhaps the most important. How does PHP help parents explore the options available for the transition to adulthood?

Maria: Parents describe it as when they transition out of school up until then the system has chased their child to provide service to their child, and when they transition out of school, the family and the child need to pursue services. So it’s a shocking reversal of process. Two years ago, PHP launched a program called Connections California, which is all about preparing for the transition to adulthood. It is the most comprehensive website and series of webinars on this topic that exists in the State of California. It focuses on transition planning, self advocacy, education and training work, preparation and adult living, and the landscape of all the things that need to be understood about transition are just vast and frankly very overwhelming to families like you look at it.And some may think they need a financial plan and support for decision making or their child needs employment, a social life or their child needs a place to live and my child medically is transitioning out of one system to another system and my retirement effect is it the ramifications of growing into adulthood are huge, so we just recommend take a look at the website and understand the landscape of all the pieces, that will that will fit together as you support your young adult child emerging into adulthood and then decide as a family what’s most important to to start off with, and every year go back to the website, take a look and set goals for this year of what you’re going to be focusing on. We do that with a caveat. To say that housing can have the longest weights, and take the most time to get organized. So a plan way ahead on the housing because it can take years to get the right services in place.

Many parents have voices major flaws they see in the system and want to do something to create change but don’t know what to do or where to start. Can you share with us what PHP’s Parents for Change Advocacy Group does?

Maria: Our systems of care that support our children only came about because people advocated for them, typically parents and allies and self-advocates. If our systems with care are not being responsive to our families, it’s up to self advocates, parents and allies to fight, to make those systems more responsive. So Parents for Change is a program we started a few years ago, and it trains parents to be advocates for system change. To tell their stories, to understand how the system works, how the decision making in the system works, how to give public testimony and so parents who are looking to make improvements in systems of care. Not everyone is able to make that sort of time commitment at certain times of their lives while they’re raising and supporting their child with a disability. So we also have 1 min advocacy opportunities that we send out in our newsletter as well as with action, alerts to inform people of when important legislation is coming, is being considered that would impact children with disabilities may impact your family or may impact other families who have children with disabilities but people can very quickly act on that by clicking a button and sending a sending an email to an elective representative. So we encourage every parent. The system is only going to be responsive to children with disabilities. If we are politically active as a group, encourage every family to when you get an action alert about disability, about a disability cost to police, participate in at least sending that email to your elected representative.

What’s the number one issue that you see, the thing that kind of needs, the most addressing, highest priority issue, that that the system or we all face.

Maria: I’m very concerned about the housing situation with the regional center clients because of the vendorization rates.That is paid, and the houses that we’ve lost, and how expensive it is to add more houses. So I have concerns 10 to 20 years out about what that landscape looks like. And I think advocacy very, very strong advocacy is needed in the next 5 to 10 years, because we have a lot of caregivers who are aging, who have family members in their homes, who will need will need places to stay so I think that’s that’s an issue that we appreciate Lsa’s work on, and all the others who work in the in the housing movement. And I think that, yeah, it certainly takes a lot of different things. There’s a lot of different facets to that problem.

If someone like me  wanted to become more involved on a volunteer basis, are there opportunities like that at Parents Helping Parents?

Maria: A lot of our volunteering is connected with our support and information groups; they’re mostly led by volunteers. So a small group of volunteers will lead a larger group. We also have a couple of dozen volunteers who help with website things, or different projects. We have a few holiday parties each year that volunteers are involved with, and then, of course, our Parents for Change advocates are volunteers in the sense that they’re providing community leadership in that area. People are finding volunteer opportunities in all, in all different aspects of the community.

How can I join PHP’s advocacy groups?

Maria: We launch like 2 to 3 advocacy cohorts per year, so we open it up and we message on our social media as well as through a newsletter over a period of like 6 weeks. Then people apply, and we have 12 slots for English speakers, and 12 spots for Spanish speakers. The best way to do it is join our newsletter, so that you’re enforced of the next meeting cohort that will begin.

There’s so many adult services out there, we’re looking to connect my adult child day programs and residential homes, where do I start?

Maria: We strongly believe that people should live person-centered lives and PHP utilizes a person-centric planning exploration. We encourage parents to have one page profiles, and a person-centered plan for their child’s life that’s inclusive of date programs and adult living aspects. So I’d recommend beginning with that person-centric planning exploration and talking to your regional center coordinator about what services may be a good match, and then beginning to get to know those programs to see what might match your child’s interests and love and loves and enjoyment of life best.

Dana: Corollary to that would be to maybe identify a couple of day programs and maybe if it’s appropriate, residential or provider. You want to do it early on and make sure you get a chance to to learn more about it and to go see it. Talk to them about it earlier in the process, before you get to a point where you’re looking for who has an opening which a lot of these programs may not have an opening. it might not show up on your radar screen. If you were waiting till that day you want to find an opening so you don’t do your research, involve your service coordinator. Don’t be afraid to go beyond that, to get to see some of those programs and learn more about them.

What is the best way to transition my child out of our home without causing a huge disruption in their life?

Maria: We strongly believe that people should live person-centered lives and PHP utilizes a person-centric planning exploration. We encourage parents to have one page profiles, and a person-centered plan for their child’s life that’s inclusive of date programs and adult living aspects. So I’d recommend beginning with that person-centric planning exploration and talking to your regional center coordinator about what services may be a good match, and then beginning to get to know those programs to see what might match your child’s interests and love and loves and enjoyment of life best.

I heard Lsa’s model is based on person centered planning. Can you talk more about that?

Dana: It’s all about the person. It’s their home, and you take that philosophy, and you just drive it every way possible. I always tell the story of when I first came to Lsa, and residential care homes, I could not believe that there were really 500 pages of regulations. I mean, who could even know, all the regulations say nothing to make sure that they’re adhering to them all. But I would get these things where somebody would say, well, according to regulations, we need to do this, and I would say, “well, what would be good enough for you?” And they would just stop and say “well, that wouldn’t be good enough for me.” I go, What you got your answer, and in most cases the regulations we’re setting a minimum bar. And they really needed permission to overachieve, because it was gonna cost more, or entail more time. But it was just done to try, and, to be as respectful and as listen as well as we possibly could. Listen to that individual, and make sure of what we did and how we did it. Reflect it, you know their input, even if they couldn’t verbalize it. So I think ultimately it was taking a philosophy and making it a way of life. But the systems stepped up quite a bit in terms of providing actual tools to facilitate person-centered planning. And a lot of training really helped us as well as some other folks that maybe didn’t have that philosophy.

How does LSA and PHP promote self determination and independence?

Maria: Connections California hub on the website has self determination or independent living skills, kind of woven throughout most of those areas. So have a look. It comes to this, for example, for some families they need to consider how medical decisions will be made after their child is 18. So there’s information for decision making versus conservatorship, right and supported decision making is a little more independent in the model, so should be informed about both of those options so your family makes the correct decision, for you, but it’s weaved throughout discussions around ITP plans, self-advocacy skills, and webinars by people like Michelle Garcia Winner would talk about you know how to develop as much independent systems as possible. Not everybody has a conservator and not everybody has a family, and you know the default is that the regional center becomes your conservator.

Maria’s Session

Learn more about how LSA provides services for individuals with IDD