Building Our Future

Family Hearing Day at the State Capitol – Wednesday, January 22nd, 2014

First, a Little Background

Connecticut is one of several states that maintain a dual public-private system of housing and support for people with intellectual and developmental disabilities. The State runs the Southbury Training School (an institution), five regional centers (“mini institutions” housing up to 40 people) and several group homes (housing 3-6 individuals each). 187 private providers, like Easter Seals and chapters of the Arc, provide additional group homes.

With few exceptions, for the last 40 years, placement in one of these settings has been the only option available for adults with a disability who cannot continue living with parents or another family member.

Over the years, demand for housing in this system has outpaced capacity. Admission to Southbury was closed in 1986. As of June 2013, there were 1,761 people on the DDS waiting list for housing placement, many having been there for years. The only people being placed in group homes today are those who are deemed “emergencies” because their caregivers (usually elderly parents) have died.

Forty years of experience has shown that group home placement or the “one-size-fits-all” approach, while better than institutionalization, does not provide the quality of life for which many had hoped.

With advances in education and medical care, most people with intellectual and developmental disabilities are able to pursue individual interests and remain engaged with the community in ways that are difficult to support in a group home setting. Placing everyone in a group home is also unsustainably expensive.

On January 22nd, we are asking our families – even those with little ones -- to attend the Family Hearing Day in Hartford. After years of stagnation and loss in the State’s support system for people with disabilities, a window of opportunity has opened and legislators are listening. Fixing the system will take many years; we need everyone to be a part of the process! To make clear what is at stake, we share the following story.

Note: Each individual with a disability is different and has different support needs. Some might need no more support than a “typical” person, and others might require round-the-clock staff, seven days a week. This example probably falls somewhere in the middle.

Do You Know What the Future Will Cost?

Let’s look at one scenario, using Sean, a real teen who lives with Down syndrome. Sean is 16 and an only child. He has no family in Connecticut, besides his parents, and little family elsewhere in the country. His support system consists of friends and neighbors, and care his parents pay for.

Make no mistake, this picture, while based in real numbers, is painted with assumptions: we assume Sean will be among the 20% of adults with intellectual disabilities who hold a job; we assume he will be able to function with a fairly limited level of support; we assume that financial catastrophe will not strike in the next six years and that his parents will be able to provide the level of financial assistance to him that they have planned.

So, fast forward for a moment, and pretend that it is Sean’s 22nd birthday, and he has just aged out of the school system.

He works 20 hours per week at a job in town, at $8.70/hour. He also gets Social Security benefits (SSI), because he is disabled.

His parents (in their sixties when Sean is 22), decide to downsize from their current home, in which they have significant equity. With the profit from that sale, coupled with money they have saved over the years for this purpose, they are able to purchase a $300,000 two-bedroom condominium in town for Sean with cash – so no mortgage payment; just taxes, upkeep, insurance and the homeowners fees.

They want Sean to be well-settled into adulthood as early as possible, so that when they die, Sean will only lose his parents, not his way of life.

Sean’s Income

SSI (Max fed base rate for 2014) $721/monthCT SSI Supplement $168/monthGross wages 20 hr/wk @ $8.70/hour $696/month

When you work and get SSI, money is deducted from your benefit, based on a fairly simple formula: the first $20 of income (from any source) does not count, and the first $65 of earned wages does not count. After that 50% of your wage is deducted from your benefit.

To calculate how much Sean’s SSI will be reduced each month, we add his CT SSI Supplement to his gross wages for a total of $864. Then we subtract $20 ($844) and $65 for a “countable” income of $779. We then divide $779 by two, to determine the amount that will be deducted from the SSI base: $389 (rounded). Sean’s monthly SSI benefit is, therefore, $389.

If Sean were to increase his earnings and/or hours to the point where his countable income equaled the maximum federal base rate of $720 ($1357 gross per month), he would lose his SSI benefit and the CT State Supplement.

Total Monthly Income After Taxes

Sean’s after-taxes monthly wage $642.00SSI benefit $389.00 Total $1031.00

** Annually, this is $12,372 or $882 over the federal poverty line**

But Doesn’t Sean Get Help From the State?

The Department of Developmental Services provides benefits to people with developmental disabilities, based on level of need. An individual level of need is determined by the results of a detailed questionnaire about the client’s skills.

In general, a person with Down syndrome with fairly significant support needs might qualify for a level of need that translates to $10,000-$12,000 per year.

THIS AMOUNT IS NOT GUARANTEED; IF THE LEGISLATURE CUTS THE DDS BUDGET IN ANY GIVEN YEAR, THE AMOUNT OF MONEY AVAILABLE FOR SUPPORT MAY BE REDUCED.

Sean’s Expenses

HOA fees $325/monthProperty taxes 292/monthMaintenance 125/monthInsurance 100/monthGas Heat/Electric 100/monthCell Phone 80/monthLand Line

30/monthCable/Internet 50/month Total $1102/month

To reduce Sean’s housing costs, his parents locate a suitable roommate for him, and the two divide the housing costs at $551 each. This leaves Sean with $480 per month to pay for food, clothing, incidentals, and entertainment. In addition to his living expenses, Sean will need to pay for support, both in his living arrangements, and at work.

Here is a rough breakdown of services he might need:

For work --

• Job coaching services • Transportation to work, as there is only very, very limited public

transportation available in his town

For living in his own home –

• Staff to assist him in day-to-day planning – groceries, paying bills, planning meals, monitoring medication, etc.

• Someone will need to be available to occasionally “negotiate the system” for him when new staff needs to be hired, or problems with transportation need to be ironed out.

For quality of life –

• Sean likes to go out once a week to a community event, or, during the summer, to the beach. While sometimes there will be an “able” friend to go with him, it is very likely he will need a paid companion to accompany him most of the time.

• He also participates in Special Olympics once a week, does therapeutic horseback riding and takes gymnastics lessons. He will need someone to transport him to those activities.

Cost of Services15 hours per week paid adult companion @ $10/hr $150/wkTransportation to work @.86/mile 34/wkMiscellaneous Transportation 129/wkIndividualized Supported Employment @$16/hr 80/wkIndividualized Home Supports @$20/hr 150/wkIndividual Support Broker @ 40.42/hr, 12 hours/yr 11/wkIndividual Goods & Services Supervisor @$15/hr 15/wk Total 52 weeks/yr $29,588

Sean’s funding for services from DDS is only $10,000, resulting in an annual shortfall of

$19,588.

How Can Sean Fix This Shortfall?

Sean’s parents cannot afford $19,588 per year in added expenses. In fact, if they provide him more than $661 in financial assistance per month, he will lose his SSI benefit. Once an SSI benefit has been lost, it can be difficult or impossible to have it reinstated.

The CT Department of Developmental Services has been holding transition workshops around the state for the last year, to help parents understand the economic pressures they will be facing, and to assist them in thinking of creative ways to deal with them.

Some of the suggestions presented at the workshops have included:

• Match Sean with a roommate who has skills that can compensate for Sean’s deficits, and with whom he can share services.

• Develop a “circle of friends and family” to volunteer to provide services. For example, instead of paying for transportation, he might identify a co-worker who works the same hours and lives near Sean to transport him to and from work; or, maybe a friend of one of those included in Sean’s “circle of friends” enjoys going to the beach; he or she could go with Sean, instead of employing a paid companion to go with him.

• His parents could act as his support broker and goods supervisor. When they die, someone from Sean’s “circle of friends” would take over.

• Help Sean access resources available through low-income programs, such as food stamps, food pantries, etc.

The Worst-Case Scenario

In the event that identifying volunteers to provide support is not sufficient, or is not dependable, Sean’s parents would have little choice but to keep him living at home with them, perhaps, using the money intended for buying him a home to pay for supports out-of-pocket. While this might result in a loss of his SSI benefit and a reduced sense of independence and self-direction over-all for Sean, On a day-to-day basis, it might improve his quality of life while his parents are alive.

In this plan, when Sean’s parents die, he would be placed in a group home, if a bed were available, or adult foster care, regardless of his wishes. His parents have arranged for their estate to be used to fund a special needs trust for him, but spending from such trusts must be monitored carefully, particularly if paying for food and housing. With the lifespan of people who live with Down syndrome now reaching into their sixties, care must be taken to conserve Sean’s resources to ensure they are available for many years.

This worst-case is not in keeping with Sean’s wishes for his life, it is not in keeping with his parents’ plans for him, nor is it in keeping with the spirit in which he was raised: to be as independent and responsible for himself as possible.

It is also not in keeping with the faith his parents placed in the people of Connecticut as they have paid taxes, contributed to the community and built their life here.

What Can We Do?

Sean and his family are not alone in this scenario. Thousands of other families are in similar circumstances, or will be in coming years. In fact, many will face much more dire conditions, because they do not have the option to purchase a home, or their loved one does not have employment.

We need to tell our representatives in Hartford how they can help.

Family Hearing Day -- January 22, 2014Legislative Office Building, 11 a.m.

• Go to the hearing and tell our legislators about the kind of support your loved one with Down syndrome might need.

• 20 copies of your testimony are required for distribution to legislators. Email your testimony to smccormick@ctdownsyndrome.org and we will make the copies for you.

• Make an appointment to meet your representative immediately following the hearing. Leave a copy of your testimony.

• Not everyone will be able to testify, due to time constraints. Come anyway -- show our legislators that we are serious about working with them to build a better future for our loved ones.