Social Security PASS Program: A pathway to self-employment

How 1 Autistic Young Man Runs a Business is a great article sent to me by reader "K." It describes how Joe Steffy, a young man with autism and Down's syndrome operates his own Kettle Corn business, Poppin' Joes Kettle Corn. This guy is from Kansas and is also nonverbal.

Joe developed his business with the help of his parents, a consultant, and a program that's news to me - the Social Security Administration's Plan to Achieve Self-Support program (PASS). He now has five part-time employees and unmeasurable self-esteem and sense of worth that comes with running your own company.

The PASS program offers resources to enable people with disabilities in the Social Security system to begin work or return to work. A key support in the program is the ability of persons who receive Social Security benefits to set aside money and/or things they own to pay for items or services needed to achieve their specific work goal.

Joe was required to develop a business plan to participate in the PASS program. The webcast on his web site, "Developing a Business Plan for Self Employment" may be useful for families exploring this employment option. The PASS program has other requirements, all outlined in this link.

More information about the program, and other success stories, can be found in this video from the University of Florida Institute for Child Health Policy.

What I don't know is how this program is fairing in light of budget cuts and the economy. It would be a shame to curtail the program, especially since participants who succeed save the government money. For example, Joe no longer receives Social Security disability payments AND he pays state and federal taxes.

If any readers have experience with this program, or know about it's future fate - please share.

Recommended web site: Disability in the Family

Disability in the Family is the web site for Lisa Lieberman, a counselor and speaker whose specialty is Living with Disability in the Family. She has expertise in Asperger's and Autism Spectrum Differences,Parenting Children & Young Adults with Disabilities, and
Adults with Chronic Physical Disabilities and their Spouses.

I mentioned Lisa'a book A “Stranger” Among Us: Hiring In-Home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences in my previous post about the importance of caregivers. Her site has full copies of great articles Lisa has published, as well as annotated links to other resources.

I encourage you to explore the Disability in the Family web site, as I continue exploring New York. I'm having a great time visiting family and old friends, and enjoying the sights, sounds and food. Real New York pizza; home made Italian ices - yum. And I am REALLY enjoying a week off from all those family management tasks. I don't mean being with my kids and husband, but taking care of all those details - the sending notes back and forth to Sayer's teacher, filling out summer camp registration forms, making lunches, and so on.

Dan is doing a great job of holding down the fort, which is likely why I have NOT felt guilty about being away. So, a big shout out for the Husband!!

Cindy's Caregiver Story: Creating University Linkages

Here is a caregiver story from a reader in Canada:

Hi there Moms,

Ahhh, the eternal search for caregivers. Drives me bananas, and I've been at it for 15 years. However, I am a believer in possibilities and not one to make an ado about the effort needed to drive forth change. I can fling paint when my job is done.

I used to have a 'roster' of seven women, most of whom were students at varying stages of their post secondary education. Now I am down to two gals. I, too, have experienced the chicken and egg scenario...too burned out to train new ones. Advertising in the paper was a dead end as it brought in ALL kinds of unique people, none with the qualifications which were advertised. Other parents have been finding it increasingly hard to find caregivers too. So, at a community all-supports meeting the issue was addressed. Even the services and associations which were mandated to 'find' care workers, have not been successful. (Four-month waits just don't cut it for most families.)

We decided that finding a 'home' for a Community Caregiver Service (screening, training and matching) would support families who were looking after children, youth or their adult parents with caregiving. A one-stop shop idea formed. We envisioned something which would serve multiple caregiver needs, provide volunteer and employment opportunities for students, part-time workers and professionally trained carers, increase quality of care with standard training for all, provide for multiple financial situations (free, funded contracts, parent contribution)all centralized through a Service Coordinator. Community support organizations would pay to use the service for their client families, training programs could offer their services for a fee, community businesses could offer 'perks' for parents and care givers alike. A One-Stop Shop.

I took our brainstorming results, pulled together a proposal and budget...(in my 'spare' time) and phoned the executive director of the most logical existing choice for a 'home' for this service. I wanted a meeting, but there were changes happening in the service and timing was off. I was sent away to get numbers of people in the community and a budget. That was a year ago. Along with the numbers of families whose child requires one-on-one care I ALSO followed up on a hunch that and placed an announcement on several websites of our local university (I call it, CommUniversity Connections - connecting student volunteers with families who need support for their child.)

I now have a list of 35 names of university students who are desperate to obtain a required 70 hours of volunteer work in their area in order to apply for the Masters programs in physio, speech, and occupational therapies. (Was it the Dalai lama that said we need to realize that we are interdependent?) This list will offer a 'jump-start' to the 'home' of a Community Caregiver Service. While using university students has its down side as they inevitably move on, it is one RENEWABLE SOURCE of caregivers.(You want to make sure they send their resume, three letters of recommendation, current First Aid and CPR, and a current Criminal Records Check.)

The last piece would be the funding of a Coordinator and administrative support person to screen, interview and do the matching of students to families - a two-year grant may just fit the bill to get a service like this on its legs and off to a good start.I am facing the rest of my life with the prospect of having to find, train and employ caregivers. My motivation is definitely personal in seeking a source of caregivers through the establishment of a new community service. But when I think of the enormous relief something like this will afford all families, the responsibility can shift to a place where interdependence is recognized and modeled. And, everyone can live happily ever after. Well, that may be a bit of a stretch. But I DO plan on carrying on with my personal dreams – become a professional development presenter on ionclusive education and the best …fling paint!

Cheers,Cindy

Dealing with Difficult Behaviors - Yours, Mine and Ours

One of the things I dread, no I mean enjoy, most about blogging are the seemingly endless opportunities to learn new technologies and ways of thinking. At the same time I can use the writing and research skills I am more confident about. There is comfort in the feeling of competence, but the line between competence and complacency can be fuzzy. Blogging keeps me on my toes.

Parenting through mid life can also bolster feelings of competence, but there’s danger in thinking you have little left to learn. Although I try to attend training sessions and workshops focused on the nuts and bolts of systems and programs , until last night it had been quite a while since I went to a talk that was more touchy-feely than fact-filled.

I heard Dr. David Pitonyak speak to the Special Education Parent, Student, Teachers Association about Dealing with Difficult Behaviors. Dr. Pitonyak regularly visits Clark County to provide training and consulting to families and organizations regarding disability support issues.

I found Dr. Pitonyak's perspective refreshing, and his words are helping me to view Sayer’s “challenging behaviors” in a new light. I’m not going to rehash his whole lecture but I do want to share two “take aways” [do I like this term or despise it? I’m still not sure!]:

Dr. Pitonyak's main point is that difficult behaviors result from unmet needs. First, when trying to understand and respond to a child’s behavior, think about this three legged-stool of issues:

REST

STRESS

SELF-CONFIDENCE

Dr. Pitonyak's belief is that most challenging behaviors result from a dysregulation of one of more of these stool legs. Often problems in one area feed off of or cause problems in another area. If you are tired, your self-confidence is weakened; if you are stressed out, you don’t sleep as well, and so on.

This idea has reassured me that Dan and I are going some things right, although there is room for improvement. I have been making an extra effort to boost Sayer’s self-confidence; i.e. “You did a great job at the library.” I’m also thinking about the link between the lack of rest and his anxiety (maybe he’s still getting used to daylight savings time ). We adults also have to contend with the three-legged stool. When I am tired from Sayer getting up early due to anxiety, I have less energy to boost his self-confidence, which would lessen his anxiety.

Dr. Pitonyak also emphasizes that persons with disabilities need to feel useful and included. Being of service,not just being the one served, is essential for self-confidence. Dan grasped that instinctively last week when he let Sayer choose a bag of ravioli at the grocery store, even though we already have three bags of the same item in the freezer. And we are on the right track since Sayer loves to help with laundry – although he can be overzealous and would wash his clothes daily if he could. We’re still working on the concept that dirty clothes must accumulate!

The second point to share is that we as parents need to appreciate the value of joy in our child’s lives. Too often, we view every event as a “’teaching moment” but don’t make enough of an effort to have fun with our children. Dr. Pitonyak's belief is that persons with disabilities are too often isolated and miss having friends. Our family is fortunate because Sayer does have some friends and maybe just as important, he perceives that he has friends.

However, Sayer is unable to pick up the phone or arrange a play date on the school bus, so it is up to Dan and me to make social moments happen. Too often, making social plans shifts to the bottom of the pile. Hearing David speak has recharged my commitment to broadening Sayer’s fun profile. Luckily, we can tap into organized social activities organized by parents, such as Friends on the Spectrum outings.

Dr. Pitonyak's web site has great information and resources; I encourage you to explore. His “7 Questions to guide the development of a support plan” link offers a good summary of his talk last night. And don’t forget to make room for some fun this week.

Caregivers: Got to get them into our lives

Caregivers. When our children are younger or first diagnosed with a disability that term may not resonate. But as our children get “asked to leave” child care centers or family child care homes, or we find that we can not leave them with the teenage gal down the street while we go to the dentist, then we take another look at the term. Eventually, we realize that finding people to take care of our children when we are not there can be a Herculean challenge.

For my mom friends and I, identifying, arranging and managing caregivers is a part-time job in itself. Although we may be able to use group child care options, more often than not our children need one-on-one care providers. Mothers who work need care, clearly, for when they are at work. But mothers who work from the home also need respite – to renew themselves, go to medical appointments, carve important “couple time” or spend time with their other children.

But, of course, we need more than warm bodies. We need to find persons who can not only keep our children safe but also, hopefully, engage them, encourage playful interaction and foster independent living skills. I have heard stories of mothers training caregivers for a few months, only for the care giver to move out of the country. I also know moms whose children have had the same caregiver for years, and wouldn't miss that caregiver's wedding for anything.

As our children get older, we see that we may need caregivers for a good while, perhaps into and through our child’s adulthood. Our children can not be left alone at a certain age, like “typical” children. This fact may be hard to swallow when our children are young and we are living day-to-day. However, it is important to realize that caregivers enrich all our lives. They can be an important part of your child’s Person-Centered-Planning team, or bring an important perspective to IEP meetings.

Our Caregiver Story

For our family, we have two steady caregivers for Sayer (three if you count our on-site fall back, brother Jacob) and each bring different gifts to our lives. We found both “B” and “M” through word of mouth recommendations from other families. “B” has worked with us for over two years. She is always up for taking Sayer on outings such as to the movies, the mall, miniature golf, or her friend's farm. Her whole family has embraced Sayer and he plays with her nephews, attends family birthday partie, and goes to “B”'s parent’s house on occasion for dinner. Since we have no extended family nearby, we really value these kinds of interactions. “B” also stays at our house for the week-end a few times a year, so Dan and I can get away. As the Master Card ad goes, “Cost of a week-end alone at the beach: Priceless.”

My friend “L” introduced us to “M” over a year ago. For the past year, “M” has met Sayer’s bus on Tuesdays and Thursdays and been his companion for two hours in the afternoon. Sayer and “M” go on scooter rides or walks,unless there is a torrential downpour or snow - and sometimes even then! “M” also helps Sayer do homework and straighten up his room. He is a true buddy for Sayer, and he understands how to manage Sayer’s behavior, since he works during the day at school with another child on the spectrum. He can draw a visual schedule on the fly – a very useful skill!

Sayer is always counting the days until “M” or “B” come – we hear “Two more nights and ‘M’comes” or “Five more nights and play golf with ‘B’ a lot. How lucky we are to have them both!

How do we find these important folks?

Often, we look to those who already interact with our children or others, such as special education instructional assistants or recreation aides/mentors. Or, we scour Craigslist for ads posted by caregivers; word on the street is that results are mixed with this tact.

A strategic, well-organized way to go about adding caregivers to your family’s life is to read A “Stranger Among Us: Hiring In-home Support for a Child with Autism Spectrum Disorders or Other Neurological Differences. In this book, author Lisa Ackerson Lieberman, a counselor and mother of a child on the autism spectrum, discusses in detail how to identify your family’s caregiving needs, recruit, evaluate and hire candidates, and effectively manage them once they are hired.

I highly recommend this book, although to confess, I have not used many of Lisa’s strategies to find a broader base of caregivers than those few we have. I know we could use more options; sometimes I have to miss meetings or other events if my three “go to"people are not available. But, to be honest, I’ve had a hard time mustering up the energy to do find potential care givers, explain Sayer’s idiosyncrasies and strategies to manage his behavior, and invite additional people to witness the goings on in our homes. I know it is a chicken or the egg issue. If we had more caregivers I’d be less prone to burn out. But I’m too burnt out to find other caregivers. Is this just me?

Share your caregiver stories

Let's share our caregiver success or horror stories, along with tips and suggestions for using caregivers through our children’s life span. If you send them to me in the comment section below, I will compile them and add to the blog – we can create our own caregiving support network.

But wait, Mom is still working on those Independent Living Skills

Ah, those Independent Living Skills our kids need to be self-sufficient. There is no surer way to bring on anxiety than to look at the list of skills that our children with special needs should master before they move out of the house and into a supported living situation.

At the Families Transition Series meeting I attended last week, we received a hand-out of Independent Living Skills that children need to work on to make the transition from living at home to living on their own (with supports). When we received this list, my friend sitting next to me commented that her daughter in college still has not mastered the entire list. It’s a useful list not only for children with disabilities, but also for all adolescents and young adults.

Taking a closer look at the list today, I see that there are a few items that I haven’t mastered yet, either – at least not all the time. I have read that for women, going through midlife is somewhat similar to experiencing adolescence, so maybe we moms need a refresher course on Independent Living Skills, too.

So, here is an annotated sampling of the items on the Independent Living Skills handout we received, with comments on how both Sayer and I are doing on building these skills.

INDEPENDENT LIVING SKILLS

Personal Care:
Gets adequate sleep

- Sayer aces this one; thank you gods of somnia.

Eats nutritious meals

- Carol needs to work on this (what food group is a Luna bar?).

Personal Safety
Says “NO” to others when appropriate

- This is an “emerging” skill for Sayer.

Knows five people to contact for help

-Carol can do this; you gotta have friends .

Social Skills
Leaves other people’s things alone

- Sayer knows to leave his brother’s Nintendo DS alone (or else, but that's another story).

Recognize other people’s needs and makes room for them

- Carol does this, sometimes too much!

Meal Preparation
Shops for food

- Sayer helps Dad with this; exposure to Trader Joe’ is a good first step.

Cooks simple meals

Carol can do this, emphasis on simple.

Allowances & Money Management
Budgets money

-Sayer is just now working on coin recognition, a building block.

Comparison shops

-Carol does this on-line - who knew this was a valuable skill!

Emotional Maturity
Recognizes other people’s feelings

- This is one of Sayer’s goals at school; he’s got “sad” and "mad" down pat.

Knows how to nurture self

- Carol knows how; implementation is sporadic.

Expression of Anger
Recognize signs of anger in self before “blowing up”

- Sayer is using a “Five-point” scale to identify his escalating emotions.

Knows how to express anger constructively

- Again, Carol knows how, implementation is sporadic.

For a full copy of the list without snarky comments, contact Darla Helt, Coordinator, at the Clark County Parent Coalition. And try to fit in a bubble bath - you'll get points for personal care AND nurturing yourself!

Mothering and the special needs services maze

Last week I attended the “System Navigation 101” Family Panel on Transition, one of the "Informing Families Transition Series" presented by the Cark County Community Services Developmental Disabilities Program in partnership with ESD 112, the Washington Initiative for Supported Employment and the Clark County Parent Coalition.

This session was chock full of information about government programs that serve the developmentally disabled throughout the life span. Maybe too much information – after the session I was somewhat slack jawed and overwhelmed.

Until now, I thought that the hardest years of parenting Sayer were the early ones – the initial diagnosis of autism, the behavior issues, getting him on track at school. Since pre-school we have been focused on early intervention, IEPs, education and inclusion goals. In the past year or so Sayer has fit into the groove of school better than before; there have been fewer meetings, and the ones we go to have been pleasant and productive. But, alas, I am realizing I don’t have the luxury of getting complacent because the future is calling.

In public school it is a given than children with special needs will be accommodated, one and all. There are “Child Find” evaluation sessions to actively identify young children who qualify for services. Yet as our children turn 18 or 21, the path is less clear. What I am rapidly learning through my venture into the transition maze is that resources are limited – for supported housing spots, for supported employment spots, for financial assistance programs for housing and health care. Family members must take a proactive role in ferreting out services, and applying for these services at certain times -such as before or after your child turns 18 or 21, or as soon as possible/yesterday.

Luckily, I have the know-how, personal contacts and time to pursue available options for Sayer – although the planning process is still daunting. I worry more about other parents, like the mother of one of Sayer’s class mates who told me “People keep telling me to apply for DD but I have no idea what that is or where to start.” In her case, I was able to get her a packet of information, but for other parents out there ……

After the “Systems Navigation 101” session I chatted with a teacher who is a member of the core group that obtained funding for the transition series. We agreed that spreading the word about transition planning is quite a challenge. As I have observed with early intervention and school services, the parents who are able to garner the most for their children are often those with “service capitol” – the education, time and ability to pressure educators and therapists for services their child is entitled to. Similarly, I am concerned that the families with the most service savvy will have the greatest success in carving a fulfilling adult lives for their children.

In the spirit of building “service capitol” for all parents of special needs children, my next posts will feature more of what I learned at this last transition session, and will include some links for information. As always, please help spread the word!

Person-Centered-Planning Resources

The Family Panel on Transition panel last Tuesday night featured a family who went through a Person-Centered-Planning process for (and with) their daughter. It also included this student's transition teacher. The person-centered-planning process featured the student and her family, the student's teacher and also persons involved in various aspects of the student's life, such as her church and swim team. One thing that really struck me about this process was that the person-centered plan became the backbone of the student's IEP. The teacher noted that rather than spending two hours at her computer writing an IEP, she joined family and community members in brainstorming a transition plan together.

Because the planning process was led by an outside facilitator (another special education staff member), the teacher was able to take off her "instructor" hat and join the others in thinking both in and outside the box. The teacher noted that while the Person-Centered-Planning process took some time, the plan that was developed ended up "driving" the student's IEP, which took relatively little time to develop.

A great web site to learn about family-centered-planning is the Person Centered Planning Education Site sponsored by the Cornell University Employment and Disability Institute. The site features free online courses on the person-centered planning process, along with readings, links and downloadable resources.

In the "good timing department,the Multnomah Parent Action Committee, a member organization of the Family Action Coalition Team (FACT), is sponsoring "Creating a Plan for Your Child: A Person Centered Planning Workshop" in Gresham on March 8th. The Events link of FACT's web site lists details for the workshop. Please note that the workshop is free but registration is required and space is limited. The Multnomah Parent Action Committee is also sponsoring the same workshop in Portland later this month, but that event is already full. If you'd like to go to the one in Gresham you may want to register sooner rather than later.

Letting go while staying vigilant

How much about raising a child with disabilities is about "letting go"? Tuesday evening I went to a Family Panel on Transition, one of the "Informing Families Transition Series" presented by the Cark County Community Services Developmental Disabilities Program in partnerwhip with ESD 112, the Washington Initiative for Supported Employment and the Clark County Parent Coaltion.

The family panel featured a mother and one of her daughters, a girl in her late teens with Downs Syndrome and visual impairments. With the help and encouragement of a teacher, this girl now takes transportation on her own to various work and volunteer sites. As we learned, the girl was more "game" to do this than her mom. When her daughter first started using public transportation, her mom would stealthily follow in her own car to make sure that she got safely to her destination. Gradually, she realized that her daughter would not be left unattended by the bus driver(s) or staff at her destination, but that took an incredible leap of faith.

Children with special needs, including adults, are incredibly vulnerable and we moms must do a constant "dance of independence" to find the balance between protection and encouragng self-reliance. "Self-determination" and "Self-reliance" are both buzz words in the world of developmental disabilities, but the cold reality is that, to be safe, such self-reliance sometimes must be monitored, especially at first. This is never more true than when a child is unable to communicate potential or ongoing abuse. I think it is important while we encourage adults with disabilities to be independent we also respect the vigilance of their parents. I suspect that many parents, particularly moms, are "accused" of being overprotective of their children with disabilities - an unfair accusation.

One of the most heart warming parts of the panel was mom recalling the day that she called to arrange a van to pick her daughter up, and was told by the operator that her daughter had already done so, on her own, and done it correctly. It was also encouraging to learn how caring and competent the girl's teacher is. I knew that each school district has a program for 18-21 year olds to help studens transition to adulthood at full potential. But I didn't know that the teachers in these programs have as much to teach parents as they do their children.

Parks & Recreation Inclusion: Isolation Buster

Parks and Recreation inclusion programs are vital survival tools for persons with disabilities and their families. They provide opportunities for fun and a sense of belonging. The Vancouver Clark Parks & Recreation inclusion program provides inclusion mentors (aides) and other accommodations that enable all children and adults to participate in their activities.

Sayer has gone to a Parks and Rec summer day camp for the past two summers, and has also gone to their winter break camps. In these camps, Sayer has gone on tons of field trips in the community, and is treasured by the camp counselors. It's wonderful to see the counselors eyes light up as give him a grand welcome each morning, rather than a look that says “uh,oh, will he cause trouble?” He has also taken gymnastics classes and rock climbing classes – these classes give our Saturdays some much needed structure.

Unlike schools, Parks and Recreation programs serve our children throughout the life span. Teens, adults and seniors with disabilities are all welcome, and such programs provide important respite for parents of older children who need a break but want their children to do something more rewarding than stay home with a caregiver.

But enough words, for a real look at the inclusion program watch this brief inclusion video of the Parks and Recreation web site (look for the "View the Inclusion Video" link). I am a member of the Access to Recreation Steering Committee that guides this program, so feel free to contact me with any questions.